Given the worsening that some people report after getting the coronavirus vaccine, Brendan asks if there is a better, safer way to get vaccinated.
Is there a safer way for people with ME/CFS to get vaccinated? (Image by Arek Socha from Pixabay)
The choice has been a difficult one: protect oneself from a potentially dangerous virus but risk a relapse by getting the coronavirus vaccine, or not get the vaccine and hope that you don’t come down with the virus. Health Rising’s poll suggests that many people with ME/CFS/FM are indeed having a hard time with the virus: about 40% reported they were still trying to get over it three months later. While some ME/CFS experts and clinicians were wary at first, most over time advised that people with ME/CFS get the vaccine.
Most people with ME/CFS appear to get through the vaccination process fine and a surprising number of people reported they benefitted from the vaccine. A significant percentage of people, though, also report having a difficult time with the vaccines. From 27% (Pfizer) to 36% (Moderna) of people with ME/CFS/FM reported experiencing severe side effects from second shot of the coronavirus vaccines on Health Rising’s polls. Fifteen percent (Pfizer) and 22% (Moderna) reported that their symptoms lasted more than 30 days.
(Too few people reported how they fared on the second Astra Zeneca shot to count. Thirty-six percent, however, reported having severe symptoms after the first shot which usually produces far fewer symptoms than the second shot. Compare that to 12% of people reporting severe symptoms after the first shots of the Pfizer/Moderna vaccines. Therefore, it appears that the Astra Zeneca vaccine is causing more problems.)
Hundreds of anecdotal reports of severe worsening can be found on the Facebook group ‘ME/CFS and the COVID Vaccines’. Some have gone from mild ME/CFS to severe, others have been bedridden for 14 weeks and counting, and others have gone from working to housebound.
Common complaints include swollen glands for weeks on end, dizziness, extreme exhaustion, muscle pain, shifts in an inability to regulate temperature, new flu-like symptoms, feeling hungover, or worsening of existing symptoms. The prolonged reactions seem to be mild to a severe worsening of ME/CFS itself – not an added new condition.
Some people are eventually recovering after 6 weeks, some after 12 weeks, but many aren’t recovering at all. Some get the second shot and feel better, but others get it and worsen more. It all seems incredibly random and unpredictable.
AstraZeneca is easily the least tolerated vaccine, Moderna is next, and Pfizer has the least amount of complaints. (This generally tracks with what Health Rising’s polls have found.)
It’s not clear why AstraZeneca is causing so many more problems, but one article suggested that AstraZeneca may have more impurities (human proteins/heat-shock proteins) that may be causing an extra inflammatory response.
It should be noted that the vaccine trials included people all ages and degrees of health but did not include immunocompromised patients. (Dr. Klimas has reported that people with ME/CFS are “modestly immunocompromised”.) Since no studies were specifically done on people with ME/CFS, we don’t know what the results of those studies would be. Perhaps if they had been done, it would have been a warning. We just don’t know.
Most people who have wrestled with the vaccine decision have probably come to the conclusion that it’s safer to get the vaccine than to risk an infection. The benefits of a successful vaccination are significant. The need to isolate oneself drops substantially. What a great relief not to have to worry about the virus. Life can approach normality again. Some may feel satisfaction from knowing that they’re doing their part to stop this pandemic.
A Safer Vaccine Approach?
What if you could have the benefits of vaccination without much of the risk attached to it?
A vaccination regimen used with other vaccines does just that. It involves a ‘lower dosing regimen using neonatal dosages”, in which half doses separated by several weeks are given in an attempt to protect infants’ less robust immune systems.
This same staggered protocol using lower doses has been used by ME/CFS experts in the past for other vaccines. Back in 2014 Alison Bested, M.D., now the Clinical Director for the Institute for Neuro-Immune Medicine (INIM) made this recommendation regarding the flu vaccine for ME/CFS sufferers…
“If you decide you would like to be vaccinated, then I recommend starting with an injection of one third the usual adult dose. If there are no side effects, then the same dose can be repeated in a month’s time, and the same again after one further month. The reason for this is that physicians specializing in ME/CFS, including myself, have reported cases of flu symptoms in some patients with ME/CFS for 4 or more weeks after the full dose of flu vaccine has been given.”
Lower dosing could be as effective, would be safer and it would reduce the vaccine hesitancy among ME/CFS sufferers. The fact that worries about the current vaccine offerings are leaving some patients hesitant to vaccinate is another reason to provide a safer vaccine strategy. The medical mantra “Primum non nocere” Latin for ‘First do no harm’ comes to mind.
It comes with some hurdles. Patients might need to have antibody testing to be sure they are in fact getting enough dosage to trigger the production of antibodies. A recent study that indicates that even a ¼ dose of the Moderna vaccine is enough to elicit a strong immune response suggests this not to be a problem. It could suggest, though, that some people with ME/CFS might need to use an even lower dose. Finding a dose that elicits an antibody response while not causing a severe reaction might take some work.
Using a lower dose regimen could mean it would take more time to acquire immunity. That might not be a worry for the many ME/CFS sufferers who are already well adjusted to waiting, and in isolation already.
While it’s important to note that people who’ve never had a bad response to a vaccine have reported having one with the coronavirus vaccine, people who’ve previously had a bad experience with a vaccine, or who have specific symptoms, might be prime candidates for a staggered vaccine approach. MEPedia reports some people with some symptoms may be more prone to relapsing from the flu vaccine.
“some doctors‘ believe/suggest a symptom list of a subgroup who may worsen from the flu vaccine [as relapse] “may be more likely to occur in those with ongoing flu like/infection symptoms, such as enlarged glands, sore throats, problems with temperature control”.
It’s surprising to me, at least, that lower vaccine dosing isn’t being embraced as an option in ME/CFS/FM. Staggered dosing seems – coming from the patient perspective – like a fair request and a good idea considering the long-term worsening that has already happened to some people with ME/CFS/FM.
The logistics of physically preparing reduced doses have improved dramatically after the announcement that the Pfizer vaccine can now be stored in the fridge for longer.
Both the Pfizer and Moderna vaccines often come in overfilled vials with useable extra vaccine in its bottles. Pooling is used to make more doses available by collecting leftover vaccine residue after each bottle has been drawn down. Pooling could make it easier to provide staggered doses to ME patients.
The fact that some countries have found that putting off second shots for months, and mixing/matching vaccines works, suggests, though, that the vaccines are very robust, and that simply staggering lower doses should not be a problem.
It is possible, though, roadblocks exist that I’m not aware of. Because the vaccines have not been tested in this manner, it’s possible that physicians may be worried about legal liabilities. Because the coronavirus is much more lethal than the flu virus -the consequences of making a mistake are much greater. Stricter guidelines may exist around the coronavirus vaccines vs the flu vaccines. Physicians may not have access to coronavirus vaccine vials. There may be other concerns that I’m not aware of. One of the reasons for doing this blog is to find out what they may be.
Given the severe consequences some people with ME/CFS have been experiencing after getting vaccination – and the potentially severe consequences of not getting vaccinated – if there is a better, safer way to get vaccinated, let’s employ it.
Thank you so much for shedding light on this.
I hope our ME doctors know, OMF, Solve ME, Bateman Horne, Nova, Center for Solutions for ME/CFS, etc know of this.
I’m 15+ weeks of extreme exhaustion, going from moderate to severe. I’ve followed Klimas’s protcol & rested. When will this end?
Perhaps we need an honest, comprehensive discussion of the use of PrEP(prophylaxis) with Ivermectin and/or Hydroxychloroquine and the treatment of covid19 with these and other sequenced drugs. Outpatient prevention and treatment of covid19 as a safe, viable alternative for ME/CFS patients has not been addressed by our specialists physicians in our community. The vaccine is experimental, so lack of long term clinical trials of long term Ivermectin use is not really an issue. Let’s discuss this as alternative, and especially for the ME patients who already have injured blood brain barriers.
Thank you much for covering this.
One of the most interesting adverse reactions both myself and other members of the Facebook group mentioned is the “legs” problem. I think it deserves special mention.
The morning after AZ (Indian version) I could not walk or stand. My legs over night became numb, stiff and weak. My legs were disconnected from my body and would not move. Totally different from my normal PEM. It felt as if something had attacked the muscles. Legs are now ‘just’ heavy weights that I can push around with a great effort.
PEM became dramatically worse overnight. Having to push my weakened muscles takes a toll maybe?
Secondly there was the severe head pain. Could feel light as it hit (I guess my optic nerve with stabbing pain ) in a totally different way to my previous light sensitivity overload problem.
None of this is resolved nearly 18 weeks later. Tried all the protocols and hints online that I have access to. There is no quick fix so please don’t suggest one.
I am in the UK so total lack of interest from GP, hospital etc
Affirming this. We need easy access to safe Iver and HCQ protocols stat.
–Both for treatment and prevention.
See brilliant evolutionary biologists Drs. Bret and Heather Weinstein’s excellent podcasts on this on their DarkHorse website podcast series.
This is an urgent matter for many with decades of ME whose time may be running out. There is a strong suppression from the pharm industry of adverse effects. I have been told this coverup is likely huge. We will see.
The FDA put a pause on the use of the Johnson and Johnson vaccine because of concern over VERY rare blood issues (six cases!). They lifted it in April
https://www.fda.gov/news-events/press-announcements/fda-and-cdc-lift-recommended-pause-johnson-johnson-janssen-covid-19-vaccine-use-following-thorough
GIven that the FDA put a pause on a vaccine in the middle of a pandemic over a very small number of cases – how can you say that “big pharma” is suppressing side effects?
To add to that, ivermectin, at least anecdotally is being used to help treat long covid patients. Perhaps there is use some translation for treatment in m.e.
I totally agree we need an honest discussion about the safe alternative, Ivermectin, for prevention and/or early treatment using the Front LIne Covid-19 Critical Care Alliance’s protocols which can be found at flccc.net.
I suspected from the beginning that the vaccines would increase inflammation in ME/CFS. We already have an abundance of inflammatory cytokines in our bodies. Can anyone truly think that adding the gasoline of the vaccine to that existing fire is not going to make a bad situation worse?
I am an RN and personally I’m doing the supplement protocol from FLCCC and have Ivermectin on hand should I get the slightest symptom. Research has found that early treatment with Ivermectin prevents acute Covid and Long Covid. We need to start listening outside of the box of the mainstream narrative in which no early treatment at all is recommended.
FLCC now has treatment protocols for Long Covid and Post Vaccination Syndrome. Here is the link for the I Recover Protocol used for Long Covid and Post Vaccination Syndrome.
https://covid19criticalcare.com/covid-19-protocols/i-recover-protocol/
Scroll down half way to view the decision tree. Best to work at this with an open minded doctor or find a referral from the FLCCC site.
For more information, the foremost researchers on long Covid are Drs. Patterson ad Yogendra. They are having success with Long Covid patients. It took them less than a year to the discovery of what works. Here is a link to one of their videos:
https://www.youtube.com/watch?v=bSObeeceZos
I believe you’ll find this information quite interesting.
Thanks – Patterson is a real researcher – thank goodness – and is someone to watch.
I agree entirely.
How often is a ivermectin used – I have it for a parasitic infection but have such strong reactions to meds right now using herbal anti parasitic until those I don’t get so sick from …
Too many questions about this experimental injection cannot be answered, even by Dr. Robert Malone, inventor of mRNA technology. He is alarmed by the lax and non-rigorous testing of this injection material and by the changes he saw on the final reports before it was put into billions of human bodies.
https://youtu.be/9E2UkhCWosg
VAERS is extremely under reported, at least 70,000 people have died from this experiment. Please do your own vigorous research. Why are they pushing it so hard, offering cash and prizes? Why are doctors, scientists and researchers with information that does not fit their fear-inciting narrative being cancelled and de-platformed? Why do they have no data to back their so-called science? We were told if we get the “vaccine”, we no longer need to wear masks and can go back to our lives yet they are mandating masks again and soon to be followed with more lock-downs.. both proven not to work! Pushing the experiment on kids now soon down to 6 months old when those with no co-morbidities have ZERO chance of dying from this virus. This is about scaring everyone into giving up their sovereignty, freedom and sadly for millions, their lives. I struggle enough living with ME/CFS. Even if I didn’t, I will never submit to this even as they violate so many civil rights and even more if they try to mandate this “vaccine”.. which is a direct and absolute violation of the Nuremberg Code. Please do your own research. We are obviously being lied to by our government and top health agencies, they cannot even keep their stories straight. We have all but lost our first amendment rights, among others. I hope that at least one person will wake up and not give into this tyranny. That’s the only way this stops. This probably won’t even get posted. I was only looking for information with no intention of commenting. God Bless you all ??
Do your research. Look these guys up. I don’t know how Robert Malone came to play such a big role in so many people’s minds but he is not a prominent virologist or vaccine researcher. He’s an MD with a Master of Science degree with a very slight publication record who is not affiliated with any academic institutions. He hasn’t published on mRNA vaccines in decades, and even then only published two papers that I can tell. Then he apparently left the field. In fact, he’s only published 4 or 5 papers on medical research in the past 20 years.
https://pubmed.ncbi.nlm.nih.gov/?term=Malone%20RW&cauthor_id=32702719&page=2
In an era where so many people are trying to score political points with science it really pays to do you due diligence and check these guys out. Malone is not a leader in way shape or form in this area.
Cort Johnson with all due respect, I think you are not well informed on Robert Malone’s background. He explains it here in the first 11 minutes of this video. Around the 8 minute mark he talks about being hired by the govt to develop vaccines for the military. He is highly qualified to speak about viruses, vaccines, immunology and, most importantly during this time, bioethics. https://youtu.be/DmW6HF7cm3c
I don’t know what he says or what he’s been hired to do. People who do noteworthy research, though, publish it. It establishes their bona fides and spreads the word. I promise you that every major breakthrough in the mRNA field has been quickly published. Academic researchers publish, military researchers publish, drug company researchers publish – and for whatever reason he hasn’t. He’s also said he’s been involved in numerous clinical trials and maybe he has – but he has not been a co-author on ANY clinical trial – which also get published. So from the publication standpoint – he’s pretty much a null character. Note that two of his few publications were on mRNA – they were done about twenty years ago as I remember – and then they stopped. Whatever kind of experience he has, he’s clearly not a leader in this field.
I agree this would be a far better option for us to try. I had my second AZ in may and still have not reached baseline, no longer working and in constant degrees of pain, passing out amongst more health issues. Currently in the process of ordering ivermectin to see if this will help, seeing as both of the meds you commented on seem to be no longer available three certain channels. Decided to buy myself.
Cort, you’re kinda making an appeal to authority fallacy in regards to Dr. Malone… If he is presenting valid concerns with supporting evidence, his publishing experience is beside the point.
Steve Kirsh is multi-millionaire entrepreneur, without any medical training. So what? If he’s right about even half of what he’s saying in this PDF, then perhaps we ought to pay attention and at least look into it:
https://www.skirsch.com/covid/All.pdf
I have CFS/POTS and I haven’t had the energy to read through every reference in his PDF at this point. And yeah… It’s alarmist in tone, which I find off-putting, and I doubt everything in it is completely solid.
But I’m not sure if it’s helpful to argue for or against the FDA’s trustworthiness in general, or over whether or not we ought to dismiss this or that individual’s concerns based upon their level of expertise.
Instead, the evidence supporting any safety concern needs to be evaluated directly.
Sweden has temporarily halted the use of the Moderna vaccine for those under the age of thirty due to concerns about myocarditis. Yet in my country (Canada), even though we’ve had many more cases of myocarditis in young people due to the jab than we’ve had covid fatalities in the same age group, the government is using heavy-handed coercion to push every individual over the age of twelve to get the jab.
Canadian doctors who treat Covid-19 with Ivermectin are being fired. Our healthcare system is dealing with a healthcare worker shortage and is so underfunded at this point that I am faced with having to travel out of country for essential medical care, and yet our government is firing nurses because it refuses to recognize natural immunity through recovering from covid-19.
If Geert Vanden Bossche Is correct, Canada is going to be in for a rough winter due to our recklessly high vaccination rates:
https://www.geertvandenbossche.org/post/the-last-post
To me, it doesn’t matter whether or not the Canadian government, the American government, the FDA, or whoever else is corrupt or incompetent at this point. What matters is getting accurate safety data before vaccine mandates are announced for schoolchildren twelve-years-old and under.
I don’t want kids to risk facing life-long disability when they’re at virtually no risk of complications from catching covid-19.
I’m just over that thirty-years-old age cutoff point, and I recovered from covid-19 just using preventative zinc picolinate and thiamine (vitamin B1), additional zinc picolinate while sick, and and high-dose vitamin C when sick. It took a lot out of me for a few months afterwards, but I’ve recovered to a higher baseline than before after I started taking lactoferrin.
Have you seen the research on using lactoferrin for covid-19 by the way? I wish I’d been able to take that when I got sick in the first place.
Liposomal Lactoferrin as Potential Preventative and Cure for COVID-19
https://ijrhs.org/sites/default/files/IntJResHealthSci-8-1-8.pdf
The in vitro antiviral activity of lactoferrin against common human coronaviruses and SARS-CoV-2 is mediated by targeting the heparan sulfate co-receptor
https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/33560940/
Could nutritional supplements act as therapeutic adjuvants in COVID-19?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7883952/
The potential for Lactoferrin to reduce SARS-CoV-2 induced cytokine storm
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7953442/
Anyway, I sure appreciate the work you’re doing here, and thank you from the bottom of my heart for continuing to push for accurate and unbiased information for CFS/ME patients. You are a hero.
I’m taking nutritionist Courtney Craig’s advice and not presupposing that any supplements will help combat a virus that can kill. She believes that’s like bringing a knife to a gunfight. I tend to agree!
Fibro and former mild CFS patient here. Just diagnosed with POTS that started soon after second Pfizer shot. I now have all the horrid POTS symptoms plus severe bed ridden CFS.
My job and house are on the line and I’m a single Mum. Pfizer has destroyed my life.
Oh come on. Ivermectin and Hydrochloriquine are both proven not to work at all – some americans have become very ill taking Ivermectin – and only anti-vaxx people go on about them. Also only they refer to the covid vaccines as “experimental”. I can see where you’re coming from.
MESSAGE TO HEALTHRISING MEMBERS
Issie
Well-Known Member
It has come to my attention that the website has been compromised and that my post on both the Forum and Blog site, what I have said and talked about and even my writing style has been changed. As of today July 18, 2021…..I will no longer participate in the forum or the blogs. A good bit of what I previously wrote has been altered and is not how I wrote it or phrased it. I hope to not let my life’s work, decades of it, be lost, tainted or claimed as someone else’s.
My goal was to help others with the multiple illnesses that seem very interconnected….ME/CFS, FMS, EDS, MCAS, Autoimmune dysfunction, inflammation, etc. My hypothesis includes that there are Autoimmune issues and inflammation as part of the core (pick your order). And there are issues in the calcium channels and with glutamate, dopamine, oxytocin, histamine. And problems in the diet with oxylates and gluten, nightshade, dairy……for a good many of us. There have been many things I have written about since I have been here, (I was one of the first ones on this forum.)
My moto and sort of trademark saying has always been…..we have to find the WHYS first. The symptoms are the lessor of two evils and very likely compensations, trying to save us. I feel we are all on a very individual journey and with different genes and many of them very “wonky”, what will work for me may not work for you. We may not can “fix” it, but we can sure put a beautiful “Purple Bandaid ?” on it.
Trying to find the WHYS to not only try to help myself, but help others has been my life and my goal for decades with my own chronic illnesses. Most of my best ideas were here and now they have been changed. Others have been successful to incorporate them into their own hypothesis and call them theirs. I never expected that I would be noticed for my ideas or contributions and that was not my goal. My goal was to get the WHYS and try to find some solutions to improve quality of life. I hope that can and will still happen, even if “Issie” is not attached to it.
I sure have HOPE that everyone can find their “Purple Bandaid ? ” and feel better and have a measure of quality of life in the chronic bodies we find ourselves. We didn’t ask for the cards we got handed, but we can make the best of them. Everyone, PLEASE, try to find an hour of JOY every day. Go outside and watch a Butterfly and feel the Sunshine, take a picture of a beautiful flower.??
That’s really sad Issie. I’m so sorry your comments have been hacked. You have so many valuable views to contribute. ?
Yep had my polite comments taken down. Gaslighting within communities is not good.
??I like what you said about finding joy. I’d like to suggest a YouTube video of a song called Chronically Beautiful. I think it will bring a lot of joy to anyone suffering with illness for a long time. The music video is very cute as well, it certainly lifts my spirits on hard days.
Thanks for this information. My local CFS doctor had recommended staggered doses for my flu vaccine, but this is the first I’ve heard it mentioned for COVID-19 vaccines.
I was reluctant to get vaccinated for COVID because my last flu shot, in 2017, triggered a relapse that never entirely ended. In all fairness, though, other factors may have played a larger role. But remaining unvaccinated for COVID was never really an option, so I decided that whatever the vaccine might do to me, it probably wouldn’t kill me, which is more than I can say for the virus.
I ended up getting the Moderna vaccine as prescribed. Had a couple of weeks of mild relapse after the first dose, and a miserable fever one day after the second dose, but nothing long-lasting.
Also, I wish our US government would approve the Novavax vaccine, as I’ve heard it tends to have fewer side effects than the mRNA or viral vector vaccines.
According to recently-published articles in the media, Novovax has completed clinical trials on 30K people, including 35% who were medically high-risk due to pre-existing health conditions, and some percentage that were over age 65. (This is in contrast to Pfizer, Moderna etc. which I understand only used healthy adults in their trials).
Novovax does not use mRNA technology, and is reported to cause fewer side effects and less severe side effects, than the other vaccines on the market, even when tested on high risk and older people.
I live a few hours drive from the Novovax manufacturing facility in Canada, where production is supposed (after some delays) to be rolling out vaccines by the end of Sept. this year.
I have not been vaxd at all, due to my concerns around having had ME for 20 years, and not feeling keen to try new technology out on my own body (mRNA vaccines). I would be willing to consider Novovax, for sure, yet already the media is saying all Canadians who wanted to be vaccinated have done so, and the Novovax will be shipped to Europe and Africa and etc. I have no clue how to go about getting a particular vaccine, rather than just turning up at my local health unit and being vaxd with whatever they happen to have on hand that day (family and friends have been getting mixtures of all three other commercially-available vaccines; just whatever the health unit had on hand that day.)
Do any other Canadians here on this site have any knowledge to share about Novovax, or about how to get a dose of it once it’s being rolled out?
I got COVID (I’ve had cfs for 26 years) it was baaaaaad. I got it in March 2020, still not close to baseline – I got first shot of Pfizer about 3 weeks ago, it’s caused a symptom flare but NOTHING compared to getting COVID.
Hopefully the second dose won’t be too bad. As risky as getting the vaccine may be to people with cfs, covid is so much worse and everyone is very likely to be infected as some stage in the next year or 2.
There is new study from April posted in Scitechdaily.com from Rensselaer Institute that using Hep C drugs combined with Remdesivir make Remdesivir 10X more effective in treating cells infected with SARS-2. Original report was in a Cell Reports paper that showed when given at low doses to virus infected cells in the presence of “simeprevir”, 10X less Remdesivir is needed to inhibit 90% of the virus than when Remdesivir is used on it’s own. And it reduces unwanted side effects in treating covid. I know Remdesivir is so-so, but this sounds very interesting for those who end up in the hospital.
Thank you for another wonderful article. I would wonder if the experts in our area have changed their mind at all about getting the vaccine. It also would be great to hear from them as to how to deal with long-term relapse is caused by the vaccine. Do you think you’d be able to interview any of the experts regarding their thoughts on the vaccine and reactions at this point?
Totally agree with your comment. After studying Ivermectin for months,a very deep dive,I ended up using the FLCCC protocols. I have moderate to severe ME/CFS,and what little energy credits I have need to be preserved. I’m isolated for the most part,except for essential outings. I took the loading dose,and now do weekly maintenance. Ordered my Ivermectin from an online telemed team that advocates Ivermectin protocols.
So sorry, Dakota, that your suffering has increased. Vaccines were the trigger for my ME and assorted illnesses 10 years ago. I would not risk taking the covid vaccines so I stay in the house. Not that I went out much anyway!! ME patients have experience with isolation. Now maybe the world can identify a bit more with us.
I too was introduced to the life of a chronically ill person from a Hep B vaccine. I did get Covid shot 1, Pfizer and had severe exacerbation if symptoms and some new things. Most have left at 12 weeks sans fatigue which I’m unfortunately pretty used to. I am putting off shot 2 till 16 weeks. I so wish they would reduce the dose by then.
I read that traditional -Inert- vaccines, those that use an inactivated virus are the ones that cause considerable less side effects. Covaxin, Sinovac, are examples. I’m not sure about Novavax and Sputnik V because they have a part of an infected pathogen. Aparently the whole pathogen causes less adverse reactions.
I am in the uk with severe ME. I’ve been extra unwell in the last two years and so I couldn’t imagine being any worse and I chose not to take the risk.
I have not had the vaccine and will not have it for some time. 1/3 staggered doses intrigues me but still on the fence. I am 59 and so in the uk I would be given the AstraZenica vaccine.
I’m disappointed that the vaccine poll didn’t ask about people who had positive reactions to the vaccine, as the data is decidedly skewed at the moment. I was fully expecting to crash for several weeks, having been in an 8 month crash prior to getting my shot. However, I woke up feeling improved and have maintained most of that for approximately 6 weeks. I have now crashed again and expect that the boost I received from stimulating my immune system has worn off, but I’m due for my second shot within the next 10 days and am hoping that I’ll have a similar boost to my energy and lowering of my PEM. I’ve discussed my results with my ME doctor and he reported that he’s had quite a few patients, including many who have also been severe, who have improved, and he’s quite surprised as it has gone against the traditional recommendations for vaccinations in the ME community. We will be looking at Imunovir once my boost from the second dose subsides as this boost shows that stimulating my immune system is beneficial to me. As there are many subsets within ME, I think it’s really important to capture all results, not just the negative ones that fit a particular expected outcome or narrative.
There is a poll that looked at that (and it is mentioned in the blog “Most people with ME/CFS appear to get through the vaccination process fine and a surprising number of people reported they benefitted from the vaccine.”)
https://www.healthrising.org/blog/2021/04/26/fibromyalgia-chronic-fatigue-experts-coronavirus-vaccine/
Of the @ 940 people who took the poll 26% reported they improved after getting the vaccine. That is a substantial enough number of people that some researchers have expressed interest in studying that phenomenon.
I am starting to have a clear brain after 3 months of two Moderna shots. I hope my brain stays clear.
Good luck!
I developed ME after a round of vaccinations advised for traveling from the UK to Egypt in my lates 30’s. I am now 59.I believe I had Covid in March of 2020 I was very sick with pneumonia and I developed vertigo and difficulty in speaking, thinking and typing after collapsing in the 4 th day it took about 3 months to recover. I will not be taking a vaccine as I would rather go through Covid again than have a relapse of ME ( which I now only have mildly now and again) as that was so much more long lived and detrimental to my health and life than covid has been.This is a difficult position to be in -having to weigh up the risks of both Covid and the covid vaccine.I totally respect the individuals choice of what risks they are willing to take with already compromised health.
Why are the companies who produce the vaccines not liable ? and can’t be sued for long term health damages or death. No compensation is available for those people and their families. If you have a safe vaccine that you are confident won’t damage people, why do you need the protection of not being able to be sued?
I don’t know but imagine it, at least partially, has to do with the huge legal costs the companies would incur even with safe vaccines. People will sue even if the vaccine didn’t cause whatever happened. It would be a huge mess particularly given all the disinformation out there about vaccines. (???)
This is how I feel.
I haven’t had either, however have had swine flu and acetal viral illnesses since being diagnosed. I won’t lie, they have knock me for six for two or three weeks yet each time I’ve recovered too my previous “high functioning” state.
I’m too afraid of the unknowns and the reported/posted number of debilitating and permanent effects of the vaccine and would rather take my chances with COVID-19 as my immune system already knows how to fight a virus.
>>Why are the companies who produce the vaccines not liable ? and can’t be sued for long term health damages or death. No compensation is available for those people and their families. If you have a safe vaccine that you are confident won’t damage people, why do you need the protection of not being able to be sued?
– a misleading impression is frequently created that covid vaccine manufacturers have been given some new immunity from liability. This is not true at all. The relevant legislation is solely the Vaccinations Act (UK) 1979. The tiny risk of a severe reaction to vaccines, or of accidentally giving people the illness in question (e.g. Russian polio vaccine 1950’s), is so costly if it arises that it is not commercially insurable. The state offers compensation under said 1979 Act but indemnifies the firms, thus encouraging innovation in vaccines. Vaccines have done more to add to human lifespan than all other medical advances taken together. The impression is often created that the Act is new, and part of some gigantic State plot or something….
I had nausea and headaches, I was extremely tired and not well at all. I had my Pfizer vaccination and for 11 days felt really unwell with the above. After one month I had my second dose of Pfizer and felt much worse this time, it has taken me about eight weeks to come out of feeling unwell with the nausea and headaches. I am hoping this does not become a regular thing like the flu shot.
I wonder if the ME specialists did a study to investigate levels of antibody production post vaccine in the ME community, like has been done for other patient groups like those with RA. Also, have any ME specialists investigated using a smaller vaccine dose in ME patients? How about a study of Ivermectin prophylaxis for ME patints and how this affects ME symptoms? There is so much that could be done to protect ME patients in the pandemic…….are there any ongoing studies?
I would love this idea to be viable, however this recent article in nature showing that “Quarter-dose of Moderna COVID vaccine still rouses a big immune response” seems to quash it.
Article here: https://www.nature.com/articles/d41586-021-01893-0
It’s the immune response itself that produces side effects in healthy people and relapses in ME folks…
RIght. This was mentioned in the blog. Who says you have to stop at a 1/4 dose? Maybe you have to go to a 1/8th of a dose or less. There must be a point at which the immune reaction is blunted sufficiently.
As the article notes three dose ranges were tested – one was too toxic; you can clearly give too much of a dose.
Lower doses have been tested. This is a research paper where two patients with a moderate allergic reaction to the first shot reacted positive to a graded vaccination scheme for their second shot.
The grading was over five doses with the first one 0.05 ml of 1:10 diluted vaccine, the fifth 0.2 ml of full strength vaccine. See https://www.acpjournals.org/doi/10.7326/L21-0104. It’s a two case studdy, so it lacks the rigorous testing legally necessary in vaccine testing. The paper states that graded dosing is common in other vaccines and they used that protocol here with success.
Getting everything through the legal validation process takes time however. Many already complain the validation of Covid vaccines is way too fast so legislators and pharma industry can’t afford to rush approving this protocol. As to subgroups, ME patients aren’t commonly offered graded dosing on older vaccines yet either, so it might take some more time till it trickles to us patients too.
Yes my thoughts are the same on that ‘big immune response’ and is why that’s in the blog.
It’s a powerful 1/4 dose and a very powerful full dose. Which is probably why even some healthy adults feel quite unwell afterwards.
But lower doses than 1/4 are having less aggressive immune responses. The key is to find out what they are.
Meaning that 1/4 dose should be still seen by us ME/CFS sufferers as a full dose for a healthy adult, and we work with dosages several fractions lower than that again.
We know these are very strong vaccines, definitely too strong for some ME/CFS sufferers. This is why the need to establish a much lower dose with them that still produces sufficient antibodies. It may (or may not) take longer to gain immunity, but it would be worth the wait. Plus many of us are isolated already so that’s could be a bit of silver lining.
Yesterday I talked with my doctor and a knowledgeable, experienced nurse (different offices) about this very subject, asking their opinion about getting one quarter dose vaccine and another a month or two later…. I was told that in the US, the only legal dose for the covid vaccines is the standard dose. The doctor, joking, said “The only way to get a quarter dose is if you sat down and as soon as they started jabbing, get up and run away fast.” I was hoping for a different answer.
The observations and suggestions in this article are valid, and wise I believe, for people with M.E./CFS and FibroMyalgia, such as myself. However, evidently the only way to receive those smaller doses is to be part of some kind of a trial. The study /trial documenting the effectiveness of quarter doses was done in Europe— one small study giving hope for millions of us all over the world. If such a thing is happening in other countries including the US, how would one find out? Is anyone aware of how to make smaller doses available?
Thanks. This is good to know. As the blog noted the legal question is a real one. COVID-19 is not the flu; it’s killed a lot of people – changing anything around the vaccines is obviously going to be more complicated.
I think I read there is another study going on. Finding out whether smaller doses can be given is a critical question given the dearth of vaccines in many countries. If you could shave the dosage down you could protect a lot more people.
I think we will be hearing more about this.
I’ve had ME for 38 years and after a severe relapse in 1990, I was given graded doses of gamma globulin, which was brilliant. It just reminded me, talking about graded vaccination.
Some idiotic doctor didn’t believe my ME doctors or my sharing information to NOT give a full dose of GG, and I was knocked out for days to weeks.
I normally took one tenth normal dose and improved almost immediately, brain fog cleared, flu cleared,strength in legs etc etc,. My other, non ME doctor, complained using one tenth wrecked it ” for those who really needed it” :((
In the end, I would take home about a third of a vial, refrigerate and give to myself once a week intermuscularly and really improve.
This discussion reminded me of the graded doses which I haven’t taken for 25 years. I just forgot about it!
My ordinary GP told me today I need to take the full dose of Pfizer ( I presume as under 60) or it’ll be 100% chance I’ll get Covid and my friend heard him say I will die.
My whole family reacts severely to flu shots, and after a horrific probable cytokine storm and inflammation from medications 8 years ago which caused neurological hell, unbearable pain, being bedridden for years and from which I am still recovering, I’d rather die than have that happen.
What *exactly* does gamma globulin do to the immune system, and could anyone see any comparison between the 10% doses of that and 10% or so vax???The only comparison is probably that they affect the immune system, but just thought I’d ask. Thanks.
sorry, again i can not read it completly.
as a stupid victim of 2 pfize vaccins and allready before verry worse, i would like to read:and what now? what are the researchers who spoke up for vaccination or those who just went silent like omf, solve me, …now going to do to help us??? I wished i never had taken the vaccines. But ill , also brainfog, i made a stupid desicion and pushed by some. Are there now going to be trials to help us out???? they all must have long heard of it, that it is not just a simple relapse for many!!! i need help as so many!!!
Tally has an excellent point IMO. The longer we allow the coronavirus to hang around the better chance it has of mutating into something that maybe nothing will stop. It’s already mutating faster than was expected.
11,000 deaths reported at VAERS now from the COVIC vaccines. My hunch is there are many, many more that are not getting reported. Getting these vaccines is not like getting as easy peasy as the media and are government are touting.
That is a misunderstanding of VAERS data. If you take a bunch of people then some are going to die from all sorts of things over time. It takes an analysis of the data to see if more people than usual are dying after the vaccine. The statistics indicate people are not dying from the vaccine. Plus, the initial studies of probably a hundred thousand or more people in the vaccine trials didn’t find people dying either.
Cort it’s gonna be with us forever. Just listened to the extremely fair Dr Malone. That’s his assessment. He also points out the vaccines aren’t as effective against this new variant.
The cat is already out of the bag.
I just don’t think vaccines are gonna be a silver bullet but rather part of tool kit, along with standard pandemic protocol.
As for moderna pulling their Vax over safety grounds
Pharmaceuticals in general do not have a great history with being completely open.
For example, on the Malone podcast, he talked about vaccine induced antibody dependency.
He says in two institutions he worked for, this was not allowed to be spoken about. This was regarding flu vaccines. He’s very fair. He says we don’t know if this will be a phenomena and for how many if it is.
The point is, he was supressed in the job from bringing up this real concern.
When you look at the history of pharmaceutical injury, you have to weigh up things in a very global way.
Sure the virus is deadly, but what are the consequence s of these vaccines.
No one knows…it’s still in stage 3 if the trials isn’t it.
There are scientists who claim the Vax is driving variants.
I’m not saying that.
How can I know just being a layman but I’m highly skeptical stopping the pandemic us possible. Logistically alone , it seems like painting the forth bridge, you get to the end and you have to start again.
I’m not saying the vaccines are completely unsafe…or that they don’t work, but m.d. sufferers should have the right to be wary and take our time deciding, perhaps seeing some studies done specifically for us.
We are never considered.
I appreciate your work. Just worried people are rushing to conclusions
It’s very possible that the virus is going to be with us long-term and that possibility has been around awhile. There is evidence, though, that the vaccines are cutting down transmission of the virus as they are reducing the amount of virus particles emitted when someone is infected.
https://medicalxpress.com/news/2021-05-evidence-covid-vaccines-transmission.html
So, while the vaccines may not be able to completely stop the pandemic but they can and have reduced its impact tremendously.
(The vaccines don’t stop someone from infected – they boost the immune response so that when someone is infected they don’t get sick or get as sick as they would have. )
With new variants making vaccines less and less effective, and absolutely no research to back up this lower dose regimen, I think it’s high time we stop speculation and get the vaccines.
People with ME/CFS randomly get worse or better. Sometimes it will coincide with vaccine so all the poll data should be taken with a grain of salt.
The harsh truth is that, thanks to not taking the pandemic seriously and letting it run rampant and mutate, we are now at a point where to get herd immunity from vaccination everyone except those in coma, allergic to vaccines, or without immune system, has to take it to stop the pandemic or we’ll have years of this; until all the medical systems and economy have completely collapsed, and the first to go will be the most vulnerable – like people with ME/CFS.
Yes, there’s a small risk with the vaccine. And there are many HUGE risks without it. Just make the logical decision.
You don”t know if vaccines will stop this pandemic. It may be that vaccinations such as Pfizer actually cause dangerous mutations. Because this technique causes your body to create spikes, which are then made antibodies against. The virus will modify these spikes so that it can still enter the cell.
You can’t just blame or ridicule people who don’t want to or can’t be vaccinated. I know people whose children have died after being vaccinated. And people who were healthy are now just as sick as ME patients. Let’s talk about that honestly too. These victims are ignored. I think that’s ridiculous.
I also don’t understand is that people who have been vaccinated are so concerned about people who have not been vaccinated. You can no longer get sick as a vaccinated person, can you? Or people don’t trust their vaccination.
let’s have a serious and open conversation about vaccines because it’s not as harmless as they say.
it is a difficult choice, especially for ME patients.
The vaccines sure are stopping the pandemic in the US. Infections are way, way down as are hospitalizations and death. Since the US hasn’t exactly been the poster child for social distancing the only thing that could have produced those results are the vaccines.
Infections are rising now as the delta variant hit states with large numbers of unvaccinated people…
I’ve never heard of the idea that vaccines make dangerous mutations more likely. In general, though vaccines seem to work very well against all sorts of pathogens including ones people used to die in large numbers from.
Vaccines are proving to be very effective for reducing transmission and especially reducing hospitalisations and death. There’s a lot of evidence of this now. It’s become a ‘pandemic of the unvaccinated’.
https://www.nbcnews.com/news/amp/ncna1273689
In answer to your question why do vaccinated people want others to be vaccinated. It’s because the more people who are vaccinated the less chance of spreading to people who can’t get vaccinated or have very vulnerable immune systemS like ourselves.
I Especially want as many people as possible to help reduce the spread to vulnerable immune compromised people who can’t produce enough antibodies from vaccination. Those people are relying on the herd of people who are vaccinated. They have loved ones who are in this situation.
Also The more people that get vaccinated as close together as possible the much greater chance of reducing future mutant variants. Some of which could be more deadly.
in Brazil a city of 45,000. 75% of their inhabitants chose to be vaccinated and they dropped deaths and hospital admissions by 95%. Vaccination is very effective in stopping a pandemic.
https://www.bbc.com/news/world-latin-america-57309538
But that’s not what this blog is about, its how low a dosage can we (those that want vaccinated) can go and still produce antibodies, i.e. can we get a low enough and safe enough dosage that prevents ME/CFS people from worsening, but also protects them.
what would you do if totally bad reaction and even allready severelly ill before and alone with bad helpservice?
“You can no longer get sick as a vaccinated person, can you?”
it looks like plenty of people are still getting infected, including the new UK health minister. [1] How many? Who knows! Dear Leaders lie about nearly everything all the time; how can we trust any reports?
My conclusion is that the Russian vaccine is probably safe and effective. If it wasn’t, western media would all over it like a goose on a June bug. But of course we will never be allowed to use it, because we hate the Russians. Although I can never remember why…
At this point rolling dice to decide to vaccinate/not vaccinate is as rational as any other approach, as stupid as that sounds.
[1] https://www.cnbc.com/2021/07/17/uk-health-minister-sajid-javid-tests-positive-for-covid.html
Right, vaccinated people are protected…even from variants ,they say. I also don’t get this Over concern from people who are vaccinated for who aren’t. Your protected why do you care so much? I know of people with MS who are vaccine hesitant and I don’t see anyone pressuring them
How can you be so sure that vaccination reduces the number of corona cases.
Statistical: last year July 22, 2020: 69,739 corona patients.
July 22, 2021, : 63,818
.
That is 5921 fewer corona infections.
Perhaps this small decrease is seasonal effect.
Well said..the virus efficacy is down to 38 percent in Israel for the double jabbed.
Tally has an excellent point IMO. The longer we allow the coronavirus to hang around the better chance it has of mutating into something that maybe nothing will stop. It’s already mutating faster than was expected.
Tally, I agree with most of what you’re saying. However I differ on suggestion that this is just chance or coincidence that ME/CFS people are worsening after vaccination.
I think there’s an overwhelming amount of anecdotal evidence now of people with ME/CFS going to extreme worsening within days of having a Covid vaccine.
I do suggest anyone thinking it’s not an actual phenomenon should read the staggering amount of adverse worsening events being reported on the ‘ME/CFS And The Covid Vaccines’ Facebook page. https://www.facebook.com/groups/226441995768222/?ref=share
It’s undeniable that there’s something happening to a large minority of ME/CFS people after their Covid vaccination. To deny that is not looking at commonalities and commonsense. True it’s not a study, but it certainly warrants investigation. Seeing correlation is where many studies are born.
Some top ME/CFS researchers in the past have publicly said vaccinations cause problems in some patients and have recommended not to have them or lower dosing. The flu vaccination and the Hep B vaccination have caused noticeable worsening in some ME/CFS patients.
I myself had serious worsening after a flu vaccination several years ago within days I started an immediate decline and never recovered. interestingly when you look at my medical files you will see that there was mild to medium worsening after vaccination every autumn. I didn’t connect the two because I thought it had something to do with the change in season. Within days after these vaccinations I was quite bad for several months, but not the years I didn’t have it.
Some ME/CFS people do worsen from vaccinations. There’s so much reporting of it, so ignoring that is not fair on those who are the victims.
I believe it definitely needs to be investigated.
More importantly we aren’t saying not to have the vaccine, we are asking for a lower dose alternative, that still produces sufficient antibodies.
It’s not a big ask
I have read that the mutations are happening from the vaccinated.
Beware what you read. Vaccinations for all sorts of really nasty pathogens have saved the lives of millions of people over the decades and I’ve never heard that they make pathogens more dangerous.
Everything you asserted there us pure speculation and to speak with such certainty is nuts.
The vaccines are only being administered in western or developed countries in a systematic way. This means, whatever we do, I’m pretty sure the virus is going to have a large pool from which to mutate.
I don’t want this vaccine becoming mandatory. That’s a very dangerous road. I also don’t want to upset my immune system any more.
I’ve already had covid, right at the beginning and any more messing around with people like me is super stressful.
Eliminating a coronavirus, to me, would seem impossible. I don’t think there is any route for that.
It seems we are stuck with this for a long time.
The virus is mutating and beating the vaccines. We’ve all seen how long the vaccination is taking. Remember, people assured us a new vaccine for each variant could be rolled out in 6 weeks. That doesn’t seem feesible..ok the science may be able to do that in the lab but I don’t think people counted on the amount of time it takes to get a vaccine to a population.
We need to research and develop other treatments no doubt, but I think blithely saying we should all get vaccinated on the spurious logic that well our symptoms wax and wane and therefore there is no correlation between Vax and symptoms is irresponsible.
With every vaccine there are people who can and can’t take and rely on herd immunity.
The medical community barely acknowledge s we exist so I’m not counting on them delivering a safe vaccine for m.e. sufferers no matter how good the intention of the vaccine is
Ok. Just needs to be said. There weren’t anywhere near 100,000 people in the trials! I mean I suppose if you tried to add every trial of every drug ever tested. At best each drug enrolled 20,000 and that got split control and subject. I read all the original papers, for fun and to see the demographics. Couple fun facts. 1. All subjects that had allergies, other illnesses, or autoimmune issues, or were pregnant were removed from the trials. That is a huge reason why no side effects were seen in trials and FOUR warnings have had to be issued sometimes months after deaths. 2. Not a single subject died or was hospitalized with Covid during the trials (I still wonder how they know how effective it is since just being in the study gave you 100% protection from severe illness!) 3. Some age groups had 10 or fewer subjects but still they claimed 98% effectiveness 4. The government was willing to approve with only 30% effectiveness 5. There are no longer control groups. We don’t know what long term effects might be unless the CDC is willing to admit to something like the previously hotly denied GB that killed and now they admit.
Well said Rene.
Tally how dare you gaslight fellow pwME?! One would think you’d know better than that! Patients didn’t randomly get worse and it coincided with the vaccine! If people were consistently at one level and shortly after the vax they got severely worse, it is LOGICAL what the cause is. I am appalled by your comment
This is what I’m shocked about. We all know the Mal practice and medical negligence we’ve had to suffer and there’s people here adopting that same ” normie” head space for vaccinating a very vulnerable group of people.
I understand it. It’s fear.
But to use hyperbole to suggest we all take the Vax. That needs t be pushed back on. It’s a kneejerk reaction
Giving this to children should be illegal also.
There’s a real madness going on here.
It’s the same mania that refused to even consider the idea this virus may be the result of a gain of function lab leak.
No one knows the truth. The left s desire to supress truths ( out of a reaction to trump, I get it) is it’s blindspot. There’s a lot of sanctimonious gesture politics instead at looking at things fairly and judiciously, no matter how hard the truths are.
Big tech supressed that story for a year. Of course, I question why that narrative is allowed now, there’s always s reason.
We all know fauci has been a stumbling block for people with m.e. , it now seems he was involved in gain of function research, reinstating it after Obama cancelled it.
I’m not suggesting conspiracy.
I am questioning levels of competency and the fact these vaccines are not free. One has to acknowledge that motive, wether it’s a huge motive or not. But past political events do suggest corporations aren’t above seeing opportunities and skimming off the last vestiges of wealthfrom the poor. The financial crash, the Iraq wars,
We know vaccines injure. Hence the legislation from 1986 to stop these companies being sued.
We know as a group we are more likely to suffer medicinal injury and therefore to try to shame people into taking the Vax is a very troubling thing to hear for me. If people with m.e. are thinking like this, what are the majority, who don’t even credit us with having an illness gonna think. This is gonna lead to horrible situations of we don’t keep a clear head and assess data. We know the CDC , the medical establishment in general is a juggernaut, almost cultish in its fervour of what is correct. We’ve all been on the wrong recieving end of this, and yet people are lapping up this Vax, even after the injury reported in this poll.
You can take the vaccine. Fine. Just don’t state with such conviction that the vaccines should be for everyone.
After all the gaslighting we’ve been through, this further gaslighting from inside the community would be funny if it wasn’t so dangerous
Oliver,
Thank you for your comments. You’re bringing up excellent points (and thank you to Cort for publishing them even though you strongly disagree).
Here’s what I DON’T get (admittedly I’m Canadian so perhaps missing some essential perspective):
“The left s desire to supress truths ( out of a reaction to trump, I get it) is it’s blindspot.”
This makes no sense to me – at all. Trump is the one who aggressively PUSHED the vaccines, with Operation WarpSpeed, etc…, alongside multiple other examples of vaccine support. He’s still pushing them now. (Matter of fact, isn’t Trump financially connected to the AstraZenica version, considered to be the worst of the lot, regardless of whether or not you’re healthy or are immune compromised/have ME?) And he kept Fauci by his side throughout his administration, as his lead in this initiative. (You can’t tell me Trump wouldn’t have known anything about Fauci’s GoF research funding.) And yet the Biden admin and most left-leaning politicians or media personalities are solidly behind them, and anyone who is vaccine hesitant is considered to be a Trump supporter. I can’t make any sense of it. With both sides pushing the same thing, but at the same time pointing fingers at each other, it feels like gaslighting, but for the life of me I can’t figure out from where, or why.
If we could JUST get the insane politics out of medicine, perhaps Drs. Naviaux, Davis, et. al. could get funding commensurate with actual medical need. Including actually trialing medical interventions (such as, but not limited to, vaccines) on medically vulnerable populations to determine safety, appropriate dosages, etc…, before pushing it on them.
Tally,
where is your proof that getting te vaccine for ME-patients is lower risk then getting the corona virus?
I can can not find a report about this?
It is is all speculation and perception, not science. Just your opinion.
what would you like to say to all those people who were healthy and are now paralyzed after vaccination or otherwise? They thought they would protect others if they were vaccinated. That was a fatal miscalculation. And I know someone like that. collateral damage?
If one checked sequenced post vaccine antibody levels, the doctor could safely adjust the doses upward…after all, it is an “experimental vaccine ” treatment in the first place. But, very, very few doctors want to be involved in anything that is outside a ” large clinical trial “….that is why patients are still denied early outpatient treatment.
If 17 months into the pandemic, we can not get practitioners to treat outpatient covid19, good luck finding a doctor to give something as easy, logical and safe as gradient doses of vaccine.
I’m 67, widowed and living alone, and I’ve had ME for 41 years. If I go into a major flare, I can’t take care of myself. I got the Moderna on 3/4 & 4/1, and I’m still not back to baseline. Upon reporting this to my PCP 2 weeks ago, she wrote it down but said nothing (I got the vaccine at her office). I didn’t expect her to “fix” it, but I did not expect total silence. Prior to all of this, I sold my old house, bought a new one, packed up about 75% of my belongings myself, and moved the end of last December. I was unpacking slowly but steadily, then I got the shots. I have been unable to resume unpacking since the 2nd shot, which I had a major reaction to. I’m furious that a person’s chronic disorders are generally not even being taken into consideration before giving these shots. I’m happy that I’m protected (somewhat) from COVID, but often wonder if it was worth it, as the price I continue to pay is much steeper than I could have imagined.
If my husband was still alive, or one of my children was living with me, it would likely be different. I would have a better chance of recovery if I wasn’t taking care of myself and my house completely on my own, but that’s not my situation.
The effect of the vaccine has been devastating for me. Everyone’s circumstances are different, but for some of us, the fear over never returning to baseline is a valid one, and frankly the future looks pretty grim. I believe we all deserve to have this studied, and reduced doses should be an option if we want them. The inflexibility concerning reduced doses is ridiculous, it’s bad medicine, and I’m sure it keeps many from getting vaccinated.
I do relate. Thankyou and sending love
Have you had or have ME/CFS?
This makes a lot of sense to me, but getting doctors to give reduced dosages might be tough. I would sure go for it. I got Pfizer and within three hours had incredible nerve pain in my right leg, which is still going on three months later, a bit better after using tapping, meditation , and breathing but I am still on pain meds. My levels of exhaustion were much worse for at least two months after the jab, and are finally getting better. I am very worried about ever having to take another vaccine, but the idea of not being protected is even worse. Thanks so much for this article and I hope the right people will pursue this!!
Be patient. Pfeizer can’t do that on its own, it’s probably just immune overreaction from M.E. Even if it takes a few months it was worth it compared to the risk of getting COVID-19, infecting others, virus mutating, getting long COVID….
And no, it isn’t many who relapsed, don’t lie, it weakens your credibility.
but instead, i get just now from omf the so manyest fundraising mail instead of advise for those affected or research for those affected, with the title “insiration for those who understand” that is bittersweet..
and it is not just a relapse, it is a decline…
konjin,
I don’t know what country you’re in, but every country will have the equivalent of the U.S. CDC VAERS (Vaccine Adverse Events Reporting System).
*Anyone* who has had an adverse reaction to a vaccine (of any type) should have your physician report it to your country’s equivalent of VAERS (or you can report yourself if your physician isn’t available):
https://www.cdc.gov/vaccinesafety/hcproviders/reportingadverseevents.html
According to the CDC, here are some of the known adverse events that vaccine recipients should be watching out for: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/adverse-events.html
A more comprehensive list of the type of adverse events that have been reported can be found by searching the database here: https://vaers.hhs.gov/data.html
The same doctors who have been warning online about the dangers of adverse impacts from these ‘vaccines*’ (*not a vaccine by the technical definition) have also been putting out videos telling people with adverse impacts what they can do to help themselves heal. They aren’t easy to find, as they’ve been heavily censored, but those videos are there. There is help out there, so please don’t lose hope.
But be sure to report what’s happened to you, through your physician if at all possible.
Anne, thank you for your kind words and understanding and advise. but who are the docters who have been warning on-line about the dangours of adverse impacts from these vaccines that have also been putting out videos telling people with adverse effects what they can do themselves to heal? do you have names, links, or so? i live in belgium and here is with the vaccines everything ok, no warnings, no comments, nothing, just get vaccinated and they try to push people in every way. also a problem with reporting what is happened to me, is here in my country, ME even does not excist. it is still cfs and with a few sessions of cbt and get you are cured. they would not even take me seriously, think just hypochondriac, etc
Hey Anne, just replying to your reply to me.
I agree.
Sorry I wasn’t clear. What I meant was the lab leak story was suppressed, not by the right but by the left.
The vaccine injury is being supressed by the right not the left.
It’s like politics has done a 180.
All the left were against the Iraq war ( rightly so) and wanted to look into the minutiae.
Detail has been very minimal from the left. And a slavish deference to the WHO and the pharmaceutical companies.
Anything else is considered tin pot conspiracy.
So some of the inconvenient facts are that there is s real possibility that the virus cane from a lab. Not a certainty at all but not an no..but big tech supressed it. I think their motive was that they thought it would inflame tensions and embolden anti Vax ideas..but I’m pretty sure columbo would’ve said ” just one more thing”…when finding out there was a virology lab dealing with bats and coronavirus in Wuhan.
The supression was ridiculous, in fact racist and dangerous.
Or contextualisation.
In the UK. The media never contextualised deaths against other causes of death or by age.
The lefts shrill cry was every life matters( which of course it does) but we are trying to steer our way to the least cause mortality. There are plenty of papers that assert lockdown kills more than it saves. This was never discussed or allowed to be discussed in the left. In fact you were trumpian if you even broached the idea.
Sweden was constantly used by the left in the media as an example of bad protocol. The left lapped this up. Yet Sweden has fewer deaths from lockdown per million than the UK.
What Corona illuminates is inequality. Wherever there is poverty of health or wealth..there will be deaths. Excess. Following the prepandemic who guidelines for pandemics let Sweden ride the waves better.
There is no talk of here immunity in the left. I fact it was seen here in England as disgusting rather than scientific phrase.
Are the vaccines really working? Or has the US for example reached natural he’d immunity.
Again the left parrots Pfizer’s data without question.
No one questioned the socio economic strategies used by pharmaceutical …we are seeing Johnson n Johnson and others being sued..Pfizer has been sued. The opiod crisis in America is caused by malpractice. Yet we unquestioningly let these people develop an experimental vaccine.
Ok I get it, it’s a crisis. But the media should have been on them like hawks. Again no dissent was allowed. No one brought up these points except people who got tagged as trump lunatics. Simply for asking questions that should be asked.
There are scientists saying these vaccines are dangerous..or will drive mutations.
Again supression instead of discussion.
Supression only makes everything worse. People recognise signals…and can misinterpret them as very nefarious…it doesn’t extinguish anything but truth when we can’t discuss.
Now we know these vaccines don’t work on the ” new” ” variant” to a good degree…instead of discussing this we are told it’s because it’s a variant evading the technology, not perhaps just maybe that the pharmaceutical s over exaggerated the efficacy in the first place.
I’m not anti vaccine..I’m glad my parents took this because of the risk reward ratio but I question the narrative. That’s what we should all be doing.
Especially us gaslit folks.
Does remind me that all the leaders just met at Davis or Cornwall wherever it was….and shortly after , covid passports are coming out. The leaders themselves didn’t follow pandemic protocol..know smthg we don’t, or just trying to assert power? Who knows..but there are some disquieting things occurring and just because this is a dangerous virus, it doesn’t mean we just through being forensic to the wind.
The left has shown it’s weakness to me. The right, we know theirs..money, callousness, I didn’t realise the lefts was cowardice in the form of gesture politics
Is anyone looking into immunotherapy? We always seem like the poor relation. Seems some special mast cell Patients hae been geting this but because many of us are without healthcare we’re just sitting ducks.
Very interesting Brendan and Cort. I’m really on the fence as I am already bedbound and isolated and feeling quite ill. This sounds like an option I might consider! I’ve been quite afraid of taking the vaccine as I’m already super hyper sensitive to most medications and supplements and get the rarest side effects quite often !
Thank you for this blog post. This does seem to make sense. I am 3 days after the second shot of Pfizer and am again experienced an increase in my pain profile. It is not as severe as after the first dose but significant non the less. I had many symptoms new and old hours after the first dose. It was as if I could feel it working in my body. I have fibromyalgia as well as ME and central sensitivity syndrome. I feel if there are booster shots, which they say will come, I would certainly pick this approach. I live in Canada so do not know if this will be an option. I will certainly advocate for it though!
Good luck Janis on getting better. My partner had an initial horrific pain reaction for a couple of days and then it just disappeared.
Cort I apologise I asserted that my messages had disappeared..they had for a while..but they’re back. Feel free to take that assertion down
I have been battling ME/CFS/CROHNS/GUILLIANE BARRE SYNDROME for more than 30 years, I am housebound and often bedbound I would not put this experimental poison in my already overwhelmed body for anything. I am appalled that anyone with a compromised immune system is being guided to be vaccinated at all, particularly as this is still in the experimental 3 year stage. I think it is criminal. I thought Doctors took an oath to 1st do no harm. Until proper testing on immune compromised subjects has been done and the results are clear I for one will not be subjecting my already embattled body to any state sponsored poison with little evidence as to to the long term effects.
I am so sorry to read of those on here that have succumbed to the propaganda and been jabbed and are now suffering, take good care of yourselves.
Lily
It is as you state, Lily; many on the forums have fallen prey to incessant and powerful propaganda, focusing on keeping all attention on only “state sponsored poisons” (thanks to pharmaceutical lobbyists purchased for decades in Congress) rushed to market without adequate or honest testing. Those who have the courage to bear cognitive dissonance and know how to do deeper research on more than the usual suspects are aware of the jab warnings from hundreds of respected doctors and researchers.
Hi Lily. on the other side of the coin, the American Rheumatolgical Society supports the use of vaccination in people with autoimmune and inflammatory diseases. So far as we can tell their immune systems are a heck of a lot more tweaked than ours are.
https://www.healio.com/news/rheumatology/20210324/acr-patients-with-rheumatic-disease-should-receive-covid19-vaccine-as-soon-as-possible
And Health Rising’s poll suggested that people with ME/CFS were having a REALLY hard time recovering from the virus.
where is the RCT study between Rheumatism patients with vaccination and without vaccination? Can you give me a web link Cort?
Thank you for this. Low doses sounds a good way to go if it can be explored thoroughly. I had AZ almost 16 weeks ago. Had most mild symptoms prior, and I am now moderate/severe and mainly housebound. It feels like it was too strong and even took me right back to feeling like I had glandular fever all over again as if the trigger virus that kicked off M.E had been reactivated. I am now stuck in a loop of my body believing it is fighting and infection – my lymph nodes have been sore throughout – and it has led to intense inflammation and worsening of symptoms. I couldn’t bring myself to have the second vaccine, even though I support the necessity of it on a collective level, because I didn’t feel strong enough and could not risk getting even worse.
I really hope this becomes an option for us.
This hasn’t gotten around much but has anyone considered trying either IV saline or oral rehydration solution? These are things that regularly help people recover from crashes….Might be worth a try.
Take ivermectin. It’s better than the vaccine because it’s anti viral and anti inflamatory. The horse gel is easy to take and cheap.
How do you know this is safe? GP prescription?
Ivermectin is on the WHO list of essential medicines. It’s been prescribe 4 billion times. Like any Ned, it has dangers but if I’m correct, it’s safer than aspirin, dose dependent of course.
Anecdotally, I’ve heard people say it’s great but I’m not sure the trials have been strong enough to reach a firm conclusions as they were done in poor countries not using the vaccibes
ivermectin…have you been using it long?
Maybe a reduced dosage in ME/cfs is a better way to go. It seems a subset of us are getting an overly robust immune response and they are relapsing some very severely for many months later. I know this as I have been personally involved in hearing their tragic stories.. As if ME/cfs isn’t already enough. I’m in New Zealand and we have no community transmission yet so I’m sitting on the fence and watching what’s happening overseas before I make an informed decision.
I feel let down by the likes of the Open Medicine Foundation, Solve ME/CFS, the ‘Bateman Horne Center‘, ‘Institute for Neuro-Immune Medicine’ and other ME/CFS representatives for their lack of public acknowledgement that the Covid Vaccines are causing severe worsening in a significant number of ME/CFS sufferers
First I’d like to say in their defence that they are great organisations and have helped us for years. However I have to ask why are they silent? 
It’s appalling that we patients are left in the dark and having to go to Facebook for medical information!
I urge others to contact these ME/CFS research groups and charities to request they set up a small study to find the lowest vaccine dose possible that still produces antibodies and doesn’t cause worsening. How hard is that?? Many of us would volunteer for that!
We just want a safer dosage. But in the meantime we aren’t getting vaccinated at all for fear of severe worsening.
To our ME/CFS representatives please stop ignoring this serious issue, Don’t behave like the medical community did by ignoring us for decades.
Now is not the time to fail us!
They are in a difficult position with funding, etc. possibly due to all kinds of political pressures and working to maintain the good they are already having a heck of a time maintaining.
It is hard trying to do the most good for the most people; that balance may be shifting in favor of Iver and HCQ protocols as the injury reports continue to surface unabated.
I’m not sure but I believe that Nancy Klimas is actually studying the effects of vaccines in people with ME/CFS. (I have to rewatch her presentation.)
Deciding what to do with the little funding you calls for difficult decisions. Here they are trying to bring about the end of ME/CFS and suddenly the coronavirus vaccines come along. If I were them I might continue to devote my money to finding the cause of ME/CFS.
Plus, it may not be possible to give lower doses of the vaccines without severe legal repercussions. I don’t even know if doctors have the vaccines in their offices (????).
Medicine has twice made me bed-ridden except for bathroom; each for a year+, with “recovery” to a lower level than before the med. I have immune abnormalities in bloodwork and skin biopsies that no one can explain. So many issues (cerebral white-matter loss, autonomic neuropathy, low-frequency hearing loss, etc) have inflammation as a likely cause. And bad reactions from other medicines, that doctors claim they don’t expect.
I won’t take any medicine–especially one affecting the immune system–unless clinical studies have shown it’s safe for people like me. What’s the chance of that happening? ?
Thanks very much for your polling. It’s very useful to have that information.
But I suspect that many of us with unexplained immune abnormalities, issues pointing to systemic inflammation, and “unexpected” bad reactions to medicines, would rather continue strict coronavirus precautions and be safe; than risk relapse or worse, from a vaccine with known risk to similar people.
It sounds a feasible option.
Also adjuvant-free vaccines might also be an option. It has been done before in Germany, but is more expensive.
But also, people need to look at other safe treatments which are being discussed by even pro-vax Doctors. There’s not much in the mainstream media whilst the Vs are being rolled out, so not everyone knows there are other, existing, well-tolerated drugs that can help massively, both as treatment and prophylaxis.
I found information at FLCCCand also BirdGroup.org.
fannie, may i ask you how you came out twice? and with what and at what level? thanks!!!
Hi konijn, I’m happy to respond, but not sure what you’re asking.
If you’re asking how I improved from the crashes, the answer would be that I don’t really know what helped. But I did rest rest rest; eat only foods that didn’t increase nausea; when I could, did very easy exercises in bed, and increased them very slowly. I always drink herbal teas with reported anti-inflammatory properties.
Before the crashes, I was out of the house 1-2 times/week. Able to cook, bathe, stand, walk. Not driving, because of seizures, light-headedness, sudden vertigo. In the crashes, all these became much worse, plus migraines, balance issues, extreme fatigue, nausea etc. Standing, walking, or sitting upright triggered the seizures, light-headedness, and spinning sensation.
In the second crash, my sleep-phase-shift disorder became extremely non-24: my sleep/wake cycles were 30-48 hours.
Is that helpful?
If not, maybe try again?
It’s high time someone brought up this subject. All it takes is for a clinician to do a small trial of the pediatric dose on an attenuated schedule with proper immunological testing of the spike proteins, etc. and we will know if this is a viable option to prevent the relapses that can happen with this vaccines and immunizations in general. Too many of us first became ill following a vaccination in the first place. Also, the temporary improvement some are experiencing can teach us more about the illness itself. Let’s turn this terrible pandemic into a learning experience for science. News reports tell us that doses are being thrown in a trash heap in some places, so you’d think the pharmaceutical companies and those in charge of the public purse would do the math and find that this may save them money in the long run.
Thank you so much for addressing this Cort and Co. We have so little to go on and you bring what we need to know to light.
This was Brendan’s baby all the way! He conceived it and brought it to Health Rising 🙂
Yes, Brendan worked very hard on this and thanks very much for publishing it, Cort.
This is now being done in dogs and cats as the incidence of severe side effects from rabies vaxx were increasing steadily. The same 1ml dose was being given to Great Danes at 150# as to 2# Chihuahuas. The science shows lower doses work and titers are done to check for antibody production. As usual vet medicine is leading the way but the veterinary “establishment won’t stand up to Big Pharma so vets are vaxxing small dogs and cats behind closed doors. The same thing will likely have to occur with ME/CFS if they want people vaxxed in the future. If you want to see the science: https://www.protectthepets.com/the-science.html
Thank you for that T. Allen! That’s so helpful. We had two cats that got their shots at the same time: our little tortoise-shell (who was a hoard rescue and otherwise had constant health problems) came through it just fine. But our big bruiser gentle giant male cat (who was strong as an ox and healthy as a horse) was horribly, horribly ill. For a few days there we thought we might lose him. Even though he was still young, he had a stroke a few years later and passed shortly afterward. No idea if there was any connection, but we’ve always wondered. I’ll definitely look into this – thank you.
Interesting!
Cort, Thanks for all of your great articles. The numbers you reported on vaccine side effects make it sound like Moderna is causing the most problems, but you also say that Astrazeneca is the most problematic. Are both true in different ways?
Thanks!
Yes,very confused by this. The HR poll has AZ as most problematic but this article has different stats and M as causing most problems.
Thanks for bringing this up. It was my mistake to shove the Astra Zeneca numbers in there. I also didn’t identify that the numbers referred to the second shot – not the first one.
When I went back and looked I found that so few people had reported on the second Astra Zeneca shot that the numbers were meaningless. Comparing the results from the first shot, though, changes things. I added the below to the blog.
(Too few people reported how they fared on the second Astra Zeneca shot to count. Thirty-six percent, however, reported having severe symptoms after the first shot which usually produces far fewer symptoms than the second shot. Compare that to 12% of people reporting severe symptoms after the first shots of the Pfizer/Moderna vaccines. Therefore, it appears that the Astra Zeneca vaccine is causing more problems.)
The gist is that HR’s poll results still do suggest that the Astra Zeneca vaccine is causing a lot more problems than the mRNA ones.
I was housebound and had not left my home for over 4 months when I got a mild case of covid. The only person I saw was my husband who never tested positive for covid, never was sick, and had no antibodies when tested. He is now fully covered by PF x 2. I developed a severe relapse ( I was already severe.) from having covid. It took 6+ months for me to regain my previous level of illness. My doctor has recommended that I not take the “v” as it has caused so many relapses in people with ME.
Sounds like you have a very intelligent doctor, Deborah. I’ve been saving the actual immunological research papers, many of which the author, Brendan, has seen as well. I’ll be taking this to my GP when I see her next, as she may need to request a medical exemption for international travel purposes (to see my family), as well as PCR testing before I leave home. It all depends on the rules of the airlines and local rules at my destination. I have a feeling no travel insurance company will agree to cover expenses of any flight cancellations.
The expenses of the individual patients keep mounting while the government agencies are not providing any alternatives, including information from proper scientific sources about alternatives. It’s like we don’t have the right to exist.
Hopefully Solve ME in the US or the ME Association in the UK will make this a priority in terms of funding a clinical trial of Brendan’s idea as soon as possible. Los Angeles County has just issued another indoor mask mandate that applies to all vaccinated people as well as those with immune related illnesses.
The World Health Organization is also calling for prophylaxis and caution. They are always hurting for funding just trying to get the vaccines to countries who can’t afford it, while the US has no choice but to let pharmacy workers throw it in the trash. The focus is vaccination compliance rather than giving people the whole story. I guess they think we’re too stupid to read research papers and government strategy documents.
I find it mind blowing that any doctor, let alone an ME/CFS doctor, would recommend this treacherous vaccine. I would love for them to tell us how to reverse the damage that many people I personally know and many I see out there, are now experiencing, because it’s not reversible. According to the CDC’s own website, VAERS, from December 14, 2021 to July 2, 2021, 438,441 adverse reactions and 9,048 deaths have been reported – and that is with their own admission that less then 1% of cases are even reported. I am not able to post the screenshot of the data, but feel free to check it out for yourselves.
After researchers get those numbers they then compare them to the number of deaths, illnesses, etc. that would have been expected anyway. Thus far those studies suggest that the vaccines, while they may cause side effects, are not killing people, etc.
Sorry Cort, in the Netherlands there are almost 500 people official died after taking a vaccin. So vaccins are also killing people.
Cort this is simply untrue. They have killed a significant numbr and injured many more. I can provide you with a u.s hearing replete with people severely injured by the Vax. It’s very disturbing.
This is deffo a risk reward scenario and the lack of transparency, fog of war, whatevr this is, is making things very difficult.
According to the hearing, there have been just under 5,000 deaths linked to the vaccine in the u.s.
Well, Oliver you can either trust rigorously controlled scientific studies designed to determine if the vaccines are producing serious side effects or you can trust anecdotal reports. The vaccine studies compared the side effects in a placebo group of people who did not get the vaccine to people who did get the vaccine. Almost 100,000 people were followed in the mRNA and Asta Zeneca trials. People on both sides of the trial died – that was expected – but there was no increase in deaths in people who received the vaccine. Nor was there an increase in serious illnesses.
When further studies found a very small increase in clotting illnesses in the Johnson and Johnson vaccine vaccinations were actually paused until researchers could study what happened. To me – that fact that a very, very small number of clotting illnesses did show up after the vaccination – which then caused the vaccinations to be temporarily halted – is point proof that the process is working. That and the vaccine trials holds more weight for me than a hearing in which people claimed they got sick because of the vaccine. Instead, they got sick around the time they got the vaccine – and so blamed it on the vaccine. That has been going on since vaccines were invented – and is why they hold these huge trials in the first place.
The trial results were publically reported. What more transparency do you need?
https://pubmed.ncbi.nlm.nih.gov/33306989/
The CDC has reported more than 6,000 deaths following vaccination. Between December 2020 and July 2021 there are a total of 12313 deaths after vaccination.
There is also an ongoing lawsuit led by attorney Thomas Rensz . This states that VAERS is fiddling with numbers. A VAERS insider has reported 45,000 deaths following vaccination.
I often agree with you Cort, but you cannot say that no people die after vaccination. This is obvious and partly acknowledged. The opposite of what you claim, you can also say that all those deaths did not die from corona but after corona and that these people all had underlying diseases. And so in your line of reasoning corona isn’t a dangerous virus.
On the basis of this line of reasoning, you state that vaccination is completely safe and no people have died from it. Just look at the studies. These studies are not independent studies and there is no longer a control group that is followed in the longer term. That’s scientific amateurism.
Can you provide a link?
Of course lots of people die after being vaccinated. The question is whether more people die after being vaccinated than after not being vaccinated. That’s why they do very large placebo-controlled studies. I think about 100,000 people have gone through them. One half gets the placebo and one half gets the vaccine and then they see how many people in either cohort.
That’s why they’re collected the VAERS data as well – so that they can tease outside effects too rare for the studies top ick up and they have found clotting issues and warned the public about them.
Wev’e heard again and again that the US has had an enormous amount of excess deaths since the coronavirus pandemic started. Those deaths would not have occurred without the pandemic.
https://www.precisionvaccinations.com/covid-19-vaccine-related-fatalities-exceed-12000-updated
I am so glad to see the article about Corona Virus vaccines in regards to ME/CFS/FM patients.
The following contains some info for all those who suffer after vaccination:
I have been holding out and have not taken the vaccine because of fear on multiple levels. (I am totally pro vaccine)For one it is known from original Pfizer studies in animals that lymphocytes are reduced after vaccination. In my mind this could lead to a reactivation of viruses in patients like us (like Herpes etc.).
I also have the fear of a heightened immune response, stronger than in a healthy person to the doses of vaccine given, putting me in a risk group for far more adverse vaccine side effects than a normal person might have from the vaccine. By that I mean all kinds of autoimmune reactions, possibly leading to adverse heart or neurological events .
The generalized and vague statements that people with adverse events post vaccination have usually preexisting conditions does not help that fear. Thankfully the approach in this article addresses one of my fears.
Some physicians talk about “post vaccine syndrome” now, which maybe (my guess) developing in patients with ME possibly along with flair ups of ME or reactivated viral illness? How to remedy this?
Well there is some help out there. Dr. Bruce Patterson is researching COVID Long Haul illness, and now has figured out part of the mechanism by which Long Haul COVID comes about. He says he uses his approach to treat Long Haulers. But he also treats ”Post -Vaccine Syndrome” the same way. He is doing so successfully, he says. As I understand it, he thinks both have the same mechanism bringing about symptoms in both groups. His is an approach of immune modulation.
For all of you who have tinnitus post vaccination, please read Dr. Patterson information, he says his approach helps.
Dr. Bruce Patterson states he wants to take his research on immune modulation later to look at ME/CFS and Post Lyme Illness.
If I understand correctly, he thinks they could be driven by a similar mechanism which then in turn drives inflammation (end of video statement)
Quite interesting result: he states, the “non classical monocles” are causing long haul. These cells however get activated by exercise, and a worsening of the condition occurs. Sounds familiar?
Here is Dr. Bruce Patterson talking to Dr. Mobeen Syed (the latter runs his own platform)
Spike Proteins In Immune Cells – Dr. Bruce Patterson Discusses COVID Long Haul – YouTube
Spike Proteins In Immune Cells – Dr. Bruce Patterson Discusses COVID Long Haul
Dr. Syed also explains on his website in much detail what “Non Classical Monocytes” are, and how they cause Long-haul, you can find it on his website and you tube; if no longer on you tube they should be on https://www.drbeen.com/ coronavirus information
Dr. Patterson’s site: https://covidlonghaulers.com/
I honestly think the current goal by WHO and global medical community is to stop a pandemic. I’m ok with that.
However I’m not ok with our ME/CFS representatives hiding in the background during our greatest time of need in the history of ME/CFS.
Cort Johnson and Brendan who wrote that blog need commended for their bravery in speaking out.
Finally we have a voice over this vaccine worsening issue
I dearly hope our charity research representatives read this, and know that we know there’s a big problem happening, and that we know nothing (that we are aware of) is being done about it.
It’s time to take action.
That medical quote “Primum non nocere” Latin for ‘First do no harm’ is exactly what they need to be thinking about. Harm is happening to some of us.
We need to know how low a dose of the vaccine we can take and still produce antibodies. So simple to check that! So why haven’t they?
Depending on who ‘they’ are in this instance, Roy, I can only guess that there isn’t sufficient interest on the part of the manufacturers to provide the product in a form which makes this research possible. There also may be insufficient interest on the part of the health authorities in various countries who are in charge of the public purse whose aim it is to end the pandemic at all costs. Compounding the problem is the public relations machine hired by the various public purses. This public relations machine does not take into account those with atypical immune systems, apart from those who are officially immuno-compromised, such as those infected with HIV or those taking chemotherapeutic drugs. Compounding the problem even further is the lack of accepted case definitions for the disease groups discussed on this forum. We don’t have a biomarker. We don’t have the kind of evidence that now exists for multiple sclerosis. Some patients in this disease group are already taking various forms of steroid medications to cope with their daily symptoms while at the same time, steroid medications are the only thing a physician can offer to quell a systemic inflammatory response in the case of an adverse reaction to a vaccine. We can air our grievances on public forums as much as we like – thanks to those who provide the funding to keep those forums and blogs operating. But how can we, as a group, advocate with a clinician and immunologist to initiate a trial into the kind of solution proposed by the author of the blog? This is a serious question, and I am open to suggestions about how to make this happen. No doubt the very few clinicians and immunologists we have in our corner may be wondering the same thing. As far as the various advocacy groups and charitable societies go, are they chasing the funding trail of Long Covid or are they willing to seek answers for those of us whose immune systems are far past the stage of initial illness? They aren’t responding to me, I can tell you that, but maybe someone else will have better luck. I hope so.
Is there any kind of inflation of statistics due to folks whom had negative reactions reporting at a higher rate?
40% chance of still having exacerbated symptoms after 3 months? I’ll pass thanks and be happy to wait until the chances of getting COVID in my country are anywhere near to 40%. Currently those chances are extraordinarily low.
The 40% quoted in the article is people still ill 3 months on after the virus itself. V reactions are significant but a lot lower than that.
Thanks for clarifying. Holy hell that’s a relief and also, makes me think I should go get me a jab.
I have gone from working to bedbound, and that isn’t included in the examples. However, I am sure that cases like myself exist.
Hi Cort, Thanks for your information.
You can’t advise that ME patients should get vaccinated based on the results, can you? Especially the patients who are already housebound and alone are at a lower risk of getting COVID.
The 30 to 40 percent chance of having serious complaints after vaccination is many times higher than in the healthy population. Even if you have been vaccinated, you are not safe against COVID. Look at Israel where almost the entire population has been vaccinated with Pfizer. The infections there are significantly increasing.
The variants that are yet to come can also bypass the vaccinations. Researchers are already working on that. So you have to get a new vaccination every year.
It is a difficult choice whether or not to vaccinate for ME patients.
It’s up to the individual. The 30-40% are the percent of people who reported they had severe symptoms. The more important figure for me is how long did it take to get over the symptoms? Fifteen to about 20% reported they still had symptoms after a month. So 80-85% reported they were OK by a month and most were OK after a couple of weeks.
These are not reassuring odds at all to me.
I had covid. It was like a baaad flu. But there are so many complicating factors surrounding vaccine safety, especially in our community that I think caution is needed.
I understand there is a great fear of covid itself.
At the same time, yes, it’s individual choice at the moment. If it stays like that fine.
But I see there being many pressures applied to the non vaxxed in years to come.
Are you aware we are still in stage 3 trials for this vaccine. It’s effectively the biggest experiment in pharmaceutical history.
I’m not sure many people have had informed consent.
The vaccines will not fully beat this. I’d prefer to try ivermectin. Tess lowrie, an English scientist says it’s got the same protective percentages as the vaccine. It is cheap, could be distributed around the world. The hesitancy to try this for the pharma is obvious. It’s out of oatent.
If we truly wanna get rid of this thing ( we never will) then we need to throw the kitchen sink at it.
I’d be really happy to take part in an ivermectin trial but there’s not a cat in hell’s chance I’ll try an experimental vaccine that hasn’t been specifically tested for us people suffering so badly already
I certainly understand feeling pressure to get vaccinated.
Look at what’s happened. The coronavirus has killed over 600,000 people in the US. Millions of people may now have long COVID. Trillions of dollars of economic losses have resulted. Businesses have closed. Millions of people lost their jobs. (The wealthy got a lot wealthier – so I guess that’s a silver lining – for them). US debt has grown enormously. To bring it home a little closer – we lost probably a year of research on ME/CFS because the labs closed down.
So yes, it’s understandable that a huge push is being made to get everyone vaccinated and you may feel some pressure to do that. There’s a lot at stake.
Informed consent is a bedrock requirement for any scientific trial in the US. In the US trials have to get past Internal Review Boards to make sure they are safe and above board. I wouldn’t worry about informed consent – not here.
It’s taken me 4 months to get about 80 percent better after the initial vaccine. For 3 months of those I was bedridden (I had mild M.E before and was running 3 times a week). Reading responses by others on here who were persuaded into getting the second jab after a bad reaction to their first, only to regret it when their conditon worsened dramatically (and chronically), has made me not trust the blanket advice to get the second vaccine. Surely, if the first vaccine triggered some severe long-term effect, then those people should not risk getting the second dose, no? There seems to be a lack of nuance on this issue. Im yet to hear someone being advised NOT to get the second dose, which sounds unscientific to me.
Cort, do you know if this has been dispersed to our ME clinicians & researchers? Surely, they would want to know this update right?
That I don’t know but some do keep up with HR.
Informed consent? Nobody knows we are still in a stage 3 trial until 2023. That’s not consent given.
Have you seen Pfizer’s rap sheet Cort? There are umpteen huge corporate fines waged against them.
I can point to hundreds of drugs withdrawn from use after they caused death and injury after going through rigorous trials.
Johnson n Johnson has heavy metals in their baby talc…I mean come on…you’d have to be completely naive to not think these figures were perhaps not to made to look such a way.
The vaccines are known to cause blood clots, seizures, leg problems long vaccine covid and heart inflammation.
You must know Cort, with all your experience,that often the bottom line is money or success, often flying in the face of facts.
If these trials were so good, how did they not pick up these very noisy signals.
As for the virus being around foreverz I never claimed it’s s new idea. It’s just a fact.
The logic is ironic too. That vaccine injury can never be attributed to vaccines as it could’ve happened anyway, whilst that same logic was shot down when applied to extremely old and vulnerable people with extremely complex medical needs who MAY have had covid in their nose when they died.
I’m just saying, hey, let’s all calm down a bit. The rest of the population will be baying for the unvaccinateds blood before long. We are a vulnerable community. You cannot apply the same vaccine pressure onto us. No matter how scared you may be.
We have the right t not be vaccinated. I just don’t like where these arguments are going.
The politicisation if medicine is becoming clear. You take the Vax if your to the left and are a callous trump follower if you have objections.
That’s how narrow the debate is becoming in the fear.
7,000 people under the age of sixty have died in the UK throughout the whole of the pandemic.
I think 600 had no underlying health problems. More people die on the roads.
Many more people die of obesity and heart disease.
I’m not deflecting away from a dangerous virus. Of course I take precautions and the rest but I’d suggest we need to step back and calm down
Vaccines are reducing deaths. But as we see in israel50 percent if new cases are in the double jabbed.
So just like eating a burger, or smoking, the Vax should be a choice we are allowed to make.
This is fast becoming authoritarian. To hear voices so stridently advocating vaccines is a shock to me given naviauxs belief that vaccines contribute to the cell danger response.
Anyway, made my point. Vaccines are a choice. Otherwise why have not been vaccinating everyone for the flu all these years???
Hi Cort,
One guestion: how many patients completed the Health Rising’s poll?
Thank you,
Gijs
If you check the results you can see how many people answered each question. About 5700 people have answered the coronavirus side effects poll.
I’m wondering where the stats for reactions over 30 days from the various vs come from that put M as the one that is by far the most problematic? The original HR poll still as AZ as being significantly more problematic than the others.
Hi Cort – thanks for the article. However, it is silent on ME/CFS patients reactions to the J&J single shot vaccine. My wife got this shot four months. Two miserably exhausted weeks then a rebound. However, lingering fatigue seems to persist vs baseline prior to the jab.
What statistics did you collect on patients response to the J&J vaccine?
We don’t have many responses to the Johnson and Johnson poll question. Thus far they seem similar to the Pfizer and Moderna results. About 20% of people reported still having side effects after a month.
https://www.healthrising.org/blog/2021/01/28/coronavirus-vaccine-effects-chronic-fatigue-syndrome-fibromyalgia/
That was a mistake. When I looked back at the AZ results we have very few for the second shot. Those did show fewer problems but there were too few to come to any conclusions.
The data from the first shot – which we got a lot of responses for – indicated that many more people had trouble with the first AZ shot than the other vaccines.
Sorry to be misleading. The blog has been updated 🙂
It’s imperative that you research how the mRNA mechanism works and you need to understand that it doesn’t provide immunity. You can still contract covid and pass it to others. I live in Canada so I will be using both Canadian and American content.
Earlier this year, the Salk Institute, started by Jonas Salk who is the creator of the Polio Vaccine, released a study that identified the Sars-Cov-2 virus was a vascular disease, not a respiratory disease. They identified that the virus spike protein causes vascular damage that results in Covid 19. This is important to know because the mRNA/DNA vaccines (not actually a vaccine as per the definition) instructs your body to produce a synthetic spike protein. https://www.salk.edu/news-release/the-novel-coronavirus-spike-protein-plays-additional-key-role-in-illness/
As per a traditional vaccine, when it’s injected into the deltoid muscle, it goes into your lymph nodes later to be destroyed by your immune system. Unfortunately, the mRNA injections don’t react the same way. Through an FOIA request (Freedom of Information Act) with Japan, Dr. Byram Bridle (Canadian Associate Professor on Viral Immunology at the University of Guelph) obtained a copy of the Pfizer Biodistribution Study, which revealed that the vaccine contents appear to travel extensively throughout the body, to the brain and other sensitive tissues, such as bone marrow, spleen, liver, adrenal glands, ovaries etc. Since he came forward, he is receiving harassment, media bias and censorship. Please review his extensive guide. https://trialsitenews.com/wp-content/uploads/2021/06/Children-and-COVID-19-Vaccines-full-guide_-FINAL-2.pdf
Dr. Charles Hoffe, who is an MD from Lytton, BC and was recently suspended for revealing the adverse events he was seeing in his patients of 28 years, has taken it upon himself to investigate what is happening to his patients. As such, he recently confirmed that the spike protein attaches to the ACE2 receptors lining your epithelial cells of your blood vessels. (Vascular Disease, not Respiratory) Your body sees those spike proteins as an injury to your cells and sends platelets to form a clot. In large blood vessels, this can result in stroke and/or heart attack. Dr. Hoffe’s main concern are the small capillaries in your lungs. Lung tissue cannot repair itself and these clots in the capillaries will cause pulmonary thrombosis which is permanent damage to your lungs. Dr. Hoffe conducted a d-dimer blood test on his patients who had received the mRNA injection within 7 days and he discovered that 62% had signs of blood clots. Below is an 8mns clip of an hour-long video explaining the mechanism of the mRNA injections.
https://rumble.com/vjino9-dire-warning-from-dr.-charles-hoffe.html?fbclid=IwAR3cNVaUJ7arBrcorG7GQc4n1UuKtyxY6PBPzQiQeDY2_rYhjYXAi0RoVw
In reference to adverse events, it should be noted that the Vaccines and Related Biological Products Advisory Committee had a meeting with the FDA on October 22, 2020. During their slide-show presentation, they presented the FDA with a list of the possible adverse outcomes of the Covid 19 vaccine. Please review slide 17 from the link I have provided. https://www.fda.gov/media/143557/download. With the list in hand, go to any Covid 19 adverse events group on facebook, telegram, Instagram and you will see firsthand the potential damage the injection can cause.
I agree with Tally above: “With new variants making vaccines less and less effective, and absolutely no research to back up this lower dose regimen, I think it’s high time we stop speculation and get the vaccines….”
I think it’s important that we me/cfs patients present as educated and rational in our doctor appointments, with our friends and family, and in publicly-searchable internet forums. I think asking for a me/cfs-specific dosing schedule now will hurt our collective credibility. Of course we’re afraid of getting worse, especially if we got me/cfs after previous vaccination. But we know the virus is mutating in unvaccinated humans. Do we want to inadvertently sicken others? I know what it’s like to be housebound with me/cfs, and I don’t want to contribute to other’s suffering.
Don’t blame us for being looked at as “uncredible” we absolutely have the right to advocate for treatments/ and options that suit our needs .. and if others are concerned about being”sickend” then they should get vaccinated, and well if they are unable, well I wouldn’t be around them
(This is a reply (2 of 2) to konijn’s post above re: what to do to help yourself deal with adverse reactions. My replies to him above don’t seem to be posting – not even as ‘awaiting moderation’, so trying again here.)
Konijn,
Here’s an article with some information you can check out with your naturopath or physician.
See the section titled:
“How to Protect Your Health Post-Jab”
https://bit.ly/3eqPe2Y
I would ignore the sections above that, as they’re overly negative (trying to warn people about possible negative consequences) and will make you feel worse. The ‘what to do’ section is what’s most important here.
It seems to me clear that (at least in the general population) those who already have had Covid are likely on average to receive less potential benefit from the vaccine than those who have not had the disease, since (at least so far) getting even the Delta variant seems to be extremely rare in those who already have had Covid.
In addition, most reports seem to suggest that (at least in the general population) people who have recovered from Covid are more likely to have short-term severe vaccine side effects than those who have not had the disease.
If we assume that the likelihood of long-term side effects is approximately zero, then I can see why there would be a good argument that people who already have had the disease should get the vaccine anyway, just in case it might help.
But the Health Rising polls suggest that in the ME/CFS population, long-term side effects are quite common (e.g. with 15-20% reporting that their health had gotten worse for more than a month after getting vaccinated).
So that suggests to me that the vaccines are considerably more risky for people with ME/CFS than for the general population (though likely less risky for them than getting Covid for the first time).
I thus would like to see some surveys looking just at those people with ME/CFS who already have had the virus, to see how those who subsequently were vaccinated have responded.
I also think that we should be keeping a close eye on this population, in terms of how common it is for these folks to get Covid more than once.
Without this information, it’s hard to know what the optimal strategy is for those with ME/CFS who already have been sick with Covid – e.g. whether they would be better off with following the standard vaccine course, with just getting one shot, with getting a smaller dosage, or not getting vaccinated at all.
Hopefully we can see more research into this topic soon, therefore.
Initially I was hesitant to get vaccinated, but eventually the argument that won me over was, better to suffer some consequences from the shot than to likely die in a hospital if I was infected.
At this point, with all my medical problems and various experiments with supplements, medications and other treatments, I just cannot pin my waxing and waning ME/CFS symptoms on anything specific. It is also exceedingly difficult to even pace. Therefore, although I did experience a sore arm at the injection site, I’m not sure the fatigue and mild headache were even related to the jab. Any other aftereffects, who knows?
Given that we have not only the Delta variant, but now Gamma and Lamda are appearing, I would get a third shot if my doctor allowed it. One thing that many don’t appreciate is that individuals vary in the amount of antibodies they produce and the range can be quite wide–just like it is difficult to determine what kind of side effects any of us might get from the vaccine.
So at this point, I am using my ‘gut instinct/intuition’ to make the call. Not very scientific, but oh well…
This “At this point, with all my medical problems and various experiments with supplements, medications and other treatments, I just cannot pin my waxing and waning ME/CFS symptoms on anything specific.” is true for me too…That’s really a problem! I imagine that that doesn’t apply to people who experienced severe and unusual relapses after the vaccination.
For me I would get a booster for sure but then again I didn’t have any real problems with the shots.
Thanks for covering this issue! I’ve never had an adverse reaction to a vaccine before the pfizer vax 4 months ago, so was so surprised to crash hard (I have yet to recover). I really regret the decision because my exposure is relatively low, and I so wish I’d had better information on the chances of side-effects back in April
Cort:, You and those conneted to the vaccines are saying the vaccines did not cause the death of people, after they got the vaccines, becasue of “underlying condition”s.
Well, if they did NOT get the vaccine, they would NOT have died. The vaccines caused something to go haywire in their body, thus causing death. underlying conditions didn’t cause the DEATH, the vaccine did.
I’ve had CFS for 35 years now, and 3 times i had a relapse. now i’m ‘livable’ after spending thousands of dollars to get here on natural treatments and supplements. Why in the world would i chance injecting this toxic components in me, who has auto-immune reactions, and who is sensitive to every single medi cation and chemical that i am near? This might be PERMANENT if you react, I’d rather wear a mask everywhere!
Robin – I understand your choice not to get vaccinated. I don’t how you’ve decided that vaccines are causing people to die – you didn’t cite any sources but my understanding on that matter is informed by the studies. The Pfizer vaccine study, for instance, was a placebo-controlled study which compared the reactions of people who got the vaccine to people who got a placebo. It followed over 40,000 and found that except for the flu-like symptoms the vaccine was expected to produce, there was no difference between the two groups. Adverse events such as serious illnesses and I imagine deaths were found in both groups in similar numbers.
https://pubmed.ncbi.nlm.nih.gov/33301246/
The Moderna trial followed over 30,000 people and got similar results.
https://pubmed.ncbi.nlm.nih.gov/33378609/
That’s just the beginning: Four systems in the US monitor the safety of vaccines.
https://www.cdc.gov/vaccinesafety/ensuringsafety/monitoring/index.html
If those systems are sensitive enough to pick up – and report – very small numbers of people who have had blood clotting issues after the vaccination certainly they would pick up an increase in death.
Hi Cort and all champions here,
A major federal lawsuit brought last week by a CDC whistleblower states something like 45,000 “clotshot” deaths have already occurred in the US alone; that gross misinforming is ongoing by governmental agency/ies; and that the VAERS numbers change suddenly and mysteriously. As this suit (I think associated with RFK and America’s Frontline Doctors, need to look this up again) goes through processing, this major legal action and exposure could bring strong change to this country, if not the world. As is known, billions have already been paid out by Big Pharma companies for coverups, previous injuries and deaths for vaccines that had the actual isolated pathogen in it, which the sars/cov gene therapy does not. Plenty of Big Pharma coverups there before cov.
Re: the statement about FDA actions stopping the situation you mentioned, this is a tiny flyspeck compared to what this new federal lawsuit alleges. We will see.
The incalculable trail of human wreckage and suffering caused by the greed of a few manipulators suppressing openness and accountability in the medical, tech and information industries has increased just by ignoring ME/NID for the last 35 years. Many victim families remember the Tuskegee experiments on humans involving syphilis; they will never forget, nor should they. Massive demonstrations against forced jabs are taking place across the planet. Are all these millions superstitious, antiscience, uneducated?
What incentive is there for the large$$t, embedded-together govt/corporate entities to change their behavior when there have been massive profits, suppression of information and more censorship and gaslighting of honest health seekers than ever before?
The victim-blaming of those not receiving shots is stunning. Many on this forum speak eloquently on this.
Political parties here and elsewhere are mostly made of humans with their own best interests in mind while in positions of power and influence, flip-flopping and dealmaking with supposed enemies, causing the massive info confusion we now witness. What incentives do they have to lose their power or reveal longterm profiteering?
Issie and deJuergens, it is heartbreaking to see your great contributions being altered.
Great praise for the ongoing dialogue here. May it continue, untrolled.
MY WARNING TO HEALTHRISING MEMBERS TOO
As Issie stated before in this thread, both the “Issie” account and the “dejurgen” account have been compromised. While we are technically still able to access our own account, we are no longer the only people who can do. We do not share each others passwords so we are not playing one against the other.
We had previously been the receiving end of attacks for information both technical and personal through various way. After the recent long time shutdown of the Healthrising website, this has escalated to levels requiring technical skills and financial means far exceeding ours.
We remain in the dark concerning the exact attack vectors and what the attackers are after. It is a sophisticated multi-vector attack beyond our expectation, blowing us both of balance very much now. The most likely goal seems to be information, identity theft of who “Issie” and “dejurgen” present or both.
We may sound paranoid, but hacking of websites is unfortunately a common practice and so is identity theft. We never expected to be estimated valuable targets that provoke such concentrated effort on our identities and ideas. Are they really valuable enough to even attempt that?
As Issie said, we both perceive new and less new members adopting much of each of our own style to the point that we sort of were surprised reading multiple comments from different people that were written in a style that we wondered “did I wrote that” or “did the other wrote that”. It is our perceptiveness combined with keen mind and observation skills that allowed either of us to try and come up with new and intriguing ideas regarding our joint ME/FM/POTS/EDS diseases.
As to why this happens, we suspect that the same people that were active in stealing info from us now try to increase their skill to edit what they stole in our style, editing away details in the information that has been taken from us, details that point to our true identities. It is hard to edit our work in such way that it sounds like it comes from a totally different person while still retaining the depth and detail in it we did put in our still unpublished ideas and drafts.
So: to all:
* Please do not use a simple password on any account including the HR one.
* Please do not use the same password on your main mail you use to protect any account.
* Please do not trust people you haven’t met face to face or over at least video with any personal information including medical information, location of yourself or your doctor, age… EVEN if those people say they want to help you and support you getting things done you really need.
* In short: don’t be so naive as we were.
To those who value the information we provided so far:
* We were planning to work for and bring out a far more readable, structured and weeded from the biggest errosr compilation of the things Issie and I worked for for years to decades and do it for free so it is available to all.
* We are badly hit by this nefarious and vile attack on our persons and hearts, on our low energy levels and our will to try and fight for ME/FM/POTS/EDS patients so much in need. We hope to recover from this very hard blow and be able to some how, some day still provide what we see as “our present” to the ME/FM/POTS/EDS community. We both are stunned that hard by this attack that we do not know if we can or will.
* Please screenshot this and store it on your personal computer. We have no idea how long we will be able to keep this message up.
* Please screenshot as many comments of “Issie” and “dejurgen” on the forum and the blogs. We have no idea where this attack starts and where it ends. They are already starting to be edited. The scale took us by surprise. This way, you can help and fight back against bad actors and hackers.
* To the computer skilled ones: please search the internet archives for “Issie” and “dejurgen” info on big search engines that have far better memory and protection against hackers then smaller sites and save it on your local computer.
To those doing this to us:
* You do not only do this to us, but to the thousands upon thousands of deeply ill people we try and help.
* By the efforts we seen before in trying to represent our info as your own in the past, you will likely not be able to present it in a way that helps patients more then it harms them.
* If you think you can make a name in ME-medical history by the information you poached and stole and get away with stealing and impersonating our work and personalities: think again. The archiving of the internet, which we used too, is brutal and very hard to undo. The computer technologies able to detect people impersonating another person including his writing style improve by the day. The trace you leave might go unnoticed now, but as soon as (if or when) you would achieve your goal to reach fame, forensic technology tools will have advanced to the level that a single savvy journalist can expose you for the fraud you committed.
=> You will not achieve your goals. That is, unless preventing and stalling us badly to help deeply sick people is the goal.
=> From now on, distrust anyone claiming to be “Issie” or “dejurgen”. From now on, any information we might come out with if and when we’d recover from this attack will share 50%-50% equally shared credits. We were equally important and vital in coming up with it. From now on, if you detect another account writing in our very typical styles, be very cautious including if those accounts claim to be the new “Issie” and “dejurgen”.
Sad regards and a broken heart,
dejurgen
So sad to read this Dejurgen, you’ve contributed so much.
To dejurgen and issie,
Please don’t give up hope. These are strange times we live in, and computer crime/hacking is rampant, but it will pass.
I used to work in IT audit and data security, so I have some idea how you’re feeling right now. Please give yourself some time before you decide to stop posting and contributing altogether. This won’t last forever, and there are ways to figure out where the weaknesses are, and how to counter it. Please don’t let it stop you altogether. Your contributions are too important.
Is this person spoofing you (see below), hacking your accounts, or both? Each needs a different approach to address, mitigate, &/or prevent it.
Has this person (these people?) also been posting publicly using your names dejurgen &/or issie using other accounts, either on the HR blog pages or on the forum? (e.g. spoofing* you?) One can do that easily on the blog; on the forum is a different matter. Has this been happening on other forums, or only on HR? If so, have you changed your passwords on the forum here and elsewhere, and has this happened since you’ve done that? You can manage your own accounts to keep hackers out, but if they’ve created separate accounts to spoof you, that needs to be handled differently (but can still be managed).
(*While not the common usage of the IT term ‘spoofing’ in your particular case, it still fits the definition. https://www.comptia.org/content/articles/what-is-spoofing https://www.forcepoint.com/cyber-edu/spoofing)
This is an alarming thing to go through, and it’s only natural to feel paranoid and disheartened, but careful methodical problem solving here will help you determine how extensive this is, and across how many platforms, which will greatly reduce your ‘paranoia’ – which I would call legitimate fear. In most cases, they will only have infiltrated a couple of accounts/sites, so their damage is limited. Once you’re able to determine where exactly this is happening, and *where it isn’t*, and then understand what you need to change to stop it and secure your accounts going forward, your fear will subside. And you’ll be able to get back to doing what you do. You’re both very logical, methodical people, so asking a series of logical questions like this comes easily to you.
I know this sounds simple, and may sound like condescending advice, but I’ve never seen logical, rational, very intelligent people do anything other than panic and start to become ‘paranoid’ (at first) when in this situation – even people who work in the security field. What you’re feeling is natural.
I had been wondering lately if something might be up, as all of a sudden numerous versions of ‘Anne’ have sprouted out of the woodwork commenting on the last few blogs (some with VERY different opinons/perspectives), and it became impossible to tell who’s who. Anne is a common name, so I could easily understand a sudden influx of ‘Anne’s’ posting. Someone posting under your rather unusual screen names, however, indicates that this isn’t an accident. Especially if attempting to imitate your style.
At the same time the multiple ‘Anne’s’ appeared, I got numerous errors &/or non-responses trying to post, especially when trying to respond to konijn here. Some replies I was never able to post at all. As Cort has been good about allowing comments of different perspectives on here, even ones he doesn’t agree with, I’m inclined to believe this was technical hijinks (whether human generated or otherwise) vs. censorship.
And, of course, it’s entirely possible that what I’ve described above is entirely unconnected to what’s been happening to your accounts, despite the coincident timing.
Your situation, sadly, serves as a good reminder to all of us about being mindful of computer security and our private information. Your advice re: not using a common password across platforms is wise. As is your point about keeping backups and archiving (although archives themselves aren’t always secure, so I wouldn’t rely on this as a primary backup.) Another thing most people don’t realize is that e-mail communication is inherently unsecure; most providers still transmit in clear text across the internet, so be very careful what you include in e-mail. Also, depending on the platform, some platform admins either are able to see user passwords in clear text (or have decryption tools to see them) &/or are able to ‘assume’ accounts – which is why limiting password use across different platforms/sites is important.
There are many other tips on what to do to stop and prevent this going forward (e.g. changing to a new e-mail account that your sites all connect to, changing authentication details (e-mail/password) on your accounts, deleting/locking accounts if necessary and creating new ones, using two-step authentication where applicable, etc…). Methodically going through these steps will help you narrow down the problem and properly secure that weakness going forward. So you can get back to doing what’s important.
If they’re instead spoofing* you, there are a few things that can be done there too, including posting on the same site (as you have here) if that’s an option, and saying things like “This person posting here under username ___ with this comment# (or date if there isn’t a unique comment identifier) isn’t us.” Contacting the site owner to have that account (or other identifiers known to site admins) banned for TOS contraventions can also be helpful. If the site owner refuses to act (or even refuses to post your comments saying that this person is spoofing you), that tells you something about the site, and you should find another one. In that case, you can post the same thing on other websites (“Person posting with our username ____, posting at site ____ on these dates (with direct links to their posts/comments if possible) IS NOT US.”)
I once discovered a fabulous blogger, who was being cyber-stalked and spoofed, by her similar themed posts/comments on a blog I happened upon. This was no longer happening to her by the time I discovered her comment (and hers was a very serious case), so that shows that this doesn’t last forever and can be stopped.
Your anger, feelings of betrayal, and even fear is legitimate. There are all kinds of unscrupulous people out there, and it’s disheartening to come across them. Luckily this doesn’t happen all that often, and there are things you can do to stop them and mitigate their damage. Please don’t lose heart.
I would be interested in these statistics:
In those that are vaccinated and do get infected with the virus –
what is the percentage that develops ME/CFS (i.e long covid)
compared to those unvaccinated that develop it?
Does the vaccine have any effect in preventing ME/CFS or does it increase likelihood?
Same for the older style of vaccines.
How do we get someone interested in studying this?
Also, individuals with ME/CFS that have received the vaccine,
have they been tested to make sure they systems have produced the antibodies?
What do those findings look like?
Thank you Cort for putting the poll together
and the articles on this subject.
I am so grateful for this community and all of the good information you provide. I have ME/CFS and CIRS, was in a year of mild symptoms after years of being severe due to a WDB. Then I ended up with COVID in April of 2020 and had long-COVID symptoms for nine months after, which brought me back to moderate-severe ME/CFS symptoms (and also some new strange ones). I chose to get vaccinated because my husband works in healthcare. I had severe inflammation–including extreme pain in my joints, hands and feet, like I’ve never had before and headaches unresponsive to pain meds– after my first Pfizer shot for four weeks. I asked my primary care and also my specialist if I should get the second shot with these symptoms and they said it would be fine. Which makes me so angry now. They were wrong. If anyone has an ongoing inflammatory reaction to the first shot it is not a good sign. I felt ok for nine days after the second shot, then had a “delayed type III hypersensitivity reaction” with fever, more joint pain, orthostatic intolerance, fatigue and that has lasted ever since–it has been twelve weeks. Every protocol I have followed for ME/CFS and also CIRS does not seem to work–a friend said it is because the toxins I am reacting to were injected into my muscle so cannot be easily removed. Some days I feel a little better and get hopeful but then it all comes back. I’ve been diagnosed with “adverse reaction to vaccine” by my primary care and referred to allergy but am afraid to go that route as no one in my region knows/understands ME/CFS and many docs (including both MDs and naturopaths) have made me worse in their ignorance. I am glad to have the treatment pdf you provide here. My specialist is out of state and too busy to give me the time of day. When I asked them for support they said to follow CDC vaccination guidelines–um, that’s how I ended up here??–which was typical of the non-response I get from that office. As a side note, I did not have antibodies from COVID after my infection, and have learned that I can’t get another dose of the vaccine due to my risk for severe allergic reactions now. I’m curious if this huge reaction actually provoked an antibody response, or if it is all for nothing. Thanks for reading/listening.
Anyone here getting a differetn second vaccine when triggered by the expereinces of one of them (i.e. mixing vaccines to avoid bad reactions)
also, from the text
*AstraZeneca is easily the least tolerated vaccine, Moderna is next, and Pfizer has the least amount of complaints. (This generally tracks with what Health Rising’s polls have found.)*
Would be good to know where the author is getting this evidence from, since the Health rising Poll is borderline meaningless in itself (2 questions referring to the same (first) vaccine shot of Pfizer elicited reponses from 6868 and 2099 people respectively – there are many instances of this sort of disparity throughout where the numbers simply do not make sense)
For all ME patients who think that vaccination against the corona virus is so harmless and scientifically so well researched that it is safe.
Why didn’t you rely on The Pace trial? CBT/GET were obviously a good way to get rid of your disease and even heal? Where did all those skeptics come from?
Do not trust the manufacturer’s research. Even though 50,000 people have been tested. It’s much more complex. It’s all psychology and scaremongering to get you vaccinated. Especially for healthy people under the age of 60.
To vaccinate an entire world based on this research is not only ridiculous and unethical, but very dangerous. There are plenty of examples where things have gone wrong in science.
I’m not saying you shouldn’t get vaccinated, but I’m saying that you should make an informed choice and not do it against your will under the pressure.
If researchers are reluctant to have a small trial due to the ethical fears, i.e. a patient contracting Covid during the study while not being fully protected, especially if only the initial early lower doses had been administered.
This scenario can be totally avoided if the trial was done in New Zealand, which is the only country in the world to consistently keep Covid out.
NZ is still Covid free within the community. Meaning a Low Dose Covid Vaccine efficacy trial for ME/CFS could be safely done there.
ME/CFS researcher Professor Warren Tate at Otago University NZ could be in charge to run the trial.
Funding shouldn’t be too hard to gather because thousands of us ME/CFS sufferers and families will put money up for it. As the results will directly affect our decision on whether to vaccinate or not.
Plus The data gathered would be of great help to convince clinicians around the world to give us a lower dosing vaccine regime
18,928 Deads after vaccination in Europe and 1,823,219 serious injuries.
https://www.healthrising.org/blog/2021/07/14/coronavirus-vaccine-chronic-fatigue-syndrome-better-way/
Collateral damage?
Decline in the effectiveness of the vaccine in Israel to 64%….. They use Pfizer.
https://www.gov.il/en/departments/news/05072021-03
https://www.globalresearch.ca/18928-dead-1-8-million-injured-50-serious-reported-in-european-unions-database-of-adverse-drug-reactions-for-covid-19-shots/5750722
Please also research a groundbreaking federal lawsuit in the US just brought by a CDC whistleblower and a nationally known health advocate group. It alleges that 45,000 jab deaths in the US alone have not been properly reported by the CDC in the VAERS. It asks that most of the gene therapy shots for certain populations stop immediately. I do not have the exact names and dates available to me at this time.
This info might be hard to find because of massive media censorship. It is easily found on the best natural health advocacy sites, but certainly not on mainstream media. It deserves review.
Do you mean this guy?
Joe Mercola: An antivaccine quack tycoon pivots effortlessly to profit from spreading COVID-19 misinformation
The Most Influential Spreader of Coronavirus Misinformation Online
Meet the world’s number 1 superspreader of COVID-19 vaccine misinformation
He’s been an anti-vaccer for decades….
From: The International Journal of Clinical Practice:
Informed consent disclosure to clinical trial subjects of risk of COVID-19 vaccines worsening clinical disease
https://onlinelibrary.wiley.com/doi/epdf/10.1111/ijcp.13795
For anyone on the fence about accepting any of the COVID-19 vaccines now in distribution it should be emphasized that they will be consenting to participate in the experimental phase of human clinical trials for which their fully informed consent is essential.
Part of informed consent not covered by this article is the fact that safe and largely effective preventive and treatment protocols were (and are) available for the COVID infection prior to their being suppressed and to a large extent outlawed in the US and globally associated countries, in order to promote the use of these experimental vaccines that depend on their “emergency use” designation in order for them to be distributed on the general populations and imposed on certain others. Also worth knowing is which “experts” and people in positions of authority regarding vaccine and treatment policies, may be financially conflicted.
It’s so frustrating to have listened to all the cfs doctors, got vaccinated and now be worse than ever. I had the usual flu like effects for three days after second shot. That passed but pots had stayed worse as well as muscle weakness. Sleep has been totally wrecked and now my lower eyelid twitches 24/7. Those aren’t going away so now my cfs is like 50% worse than before I got the second shot. I just wish all the healthy people would have been vaccinated quickly so us sick people wouldn’t have had to.
I’m wanting to find a doctor who will try out something like this! So many of our communities and doctors want higher vaccination rates, and I think a lot of us would sign up for a trial if anyone would try giving us half-doses. Wouldn’t it be win-win? They could get the scientific information they need to make future recommendations. They could get higher vaccination rates for the community. And we would have a chance at getting at least some protection, maybe with a smaller chance of a bad reaction. I don’t see what there is to lose, but I’ve not yet found a doctor who will try this. If a study like this does happen (especially one that we can all safely participate in without travel–after all, if we’re trying to get vaccinated, then we aren’t yet . . . ), could you let us know?
I agree, although half doses may still be too strong. Just by knowing that the trial on the Moderna vaccine, a 1/4 dose was found to be fully protective in healthy adults, giving them a “Big immune response”. Meaning 1/4 dose of Moderna is still a full dose, and therefore I’d be wanting fractal doses lower again. i.e. half of that powerful 1/4 dose is 1/8th of a dose.
One would need to have several of these fractal doses over several months and have antibody tests to insure immunity has been sufficiently acquired.
I’m still quite interested in this. My doctor told me, though, that the level of immunity I would need is still unknown–we can test for antibodies, but we can’t know what would be enough antibodies and can’t be sure we’re measuring the right thing.
If you were to try this, how would you test to see whether you’d reached the goal? Is there any study showing what we should aim for if we try this?
Thanks!
Has anyone already tried this (the smaller doses, that is)? If so, what was your dosage and scheduling, and what was your reaction to the vaccine? Also, did you get an antibody test afterward? Did the vaccine on a different schedule work for you? I’d be very interested in knowing more! I realize that very few have probably been able to do this so far, but it seems like a great option to me and I’m wondering how anyone who has done it has fared. Thank you!
I had one dose of Pfizer and won’t be having the second. The unwellness that followed is too harsh. I am that ill I cannot see how the one dose has not covered me. I am not anti vaccines, but this is to much. We have to live our lives.
This is the key thing I need.
I also need studies on the many diseases I have.
This must be done.
If the FDA can pause a vaccine over 6 cases, …
Thank you for this information. I would hope the CDC would revise their guidelines to allow exemptions for ME/CFS sufferers until there are viable options that do not produce adverse reactions. When I originally read the CDC guidelines indicating they had no safety data for immunocompromised individuals my thought was “why would anyone with ME/CFS risk it?” The very nature of this condition is the unknown of what you are going to react to and how severe your reaction is going to be. Now many companies are accepting the notion that they need a vaccine mandate and mine is one of them. No testing option. I cannot get a medical exemption because “suspected risk” does not rise to the level of the CDC’s guidelines allowing an exemption. I left a job that was accommodating my disability (short hours, reduced and flexible work week, low stress, etc.) because the statistics are showing me my chances of damage from the vaccine itself are significant and once it’s done, it’s done.
I have been battling fatigue and chronic pain for almost 10 years now following a bad case of mononucleosis. Pfizer vaccine triggered a progression of symptoms that left me bedridden following the first shot. It has been 11 months now and I have seen little to no improvement in my symptoms
How are you going now Chris? I had the Pfizer last November and have been bedridden since. Mild mecfs before, now I can’t even get my head off the pillow. Nerve pain, palpitations, low BP, general dysautonomia symptoms on top of the crushing fatigue. Reactive lymph nodes and ANA bloods off the cahrts and thyroid is now impacted. Wish I never got it!
I have many of the same symptoms, it has been 13 months and I’m no better, if anything I’m feeling worse the last few weeks. Is there anyone who had a bad reaction to the Pfizer and then got back to baseline? I’m losing hope
The COVID-19 pandemic is now the most dangerous infectious disease on the planet, infecting millions of people. It affects people of all ages and genders, and it is the most easily transmitted human pathogen yet discovered. With the global increase in COVID-19 infection and mortality rates, illness prevention is a top issue. Scientists from around the world are working to develop more sophisticated diagnostic tests, effective vaccinations, and novel therapy regimens based on Covid-19 patient samples in order to put an end to the Coronavirus pandemic.
Thank you! I have ME/CFS and had adverse reactions to Astra-Zenica and Moderna. Pfizer was fine. I’ve now reacted negatively to the latest (5th) booster, with fatigue, dizziness, and increased myalgia. Never a dull moment!