Lorrie Rivers is back with a 7-day “Long Covid and ME/CFS Holistic Healing Virtual Summit“. Online summits are all over the place and Health Rising gets many requests to promote them, but we only promote a few and always promote Lorrie’s. Why? Because Lorrie has personal experience with fibromyalgia, chronic fatigue syndrome (ME/CFS), and long COVID, and has developed her own unique blend of nutritional and mind/body approaches to deal with them.
That means her Summits boast a variety of speakers who poke at these diseases from a multitude of directions. As someone who believes that it will often take a variety of treatments to succeed, this makes sense to me.
Looking at the list of functional medicine disease doctors in the Summit, it’s remarkable how many (Teitelbaum, Hirsh, Krick, Rawls) got into the functional medicine field when traditional medicine failed to help them with their mysterious chronic illnesses.
Bill Rawls MD, an author and former chronic Lyme disease patient, wrote:
“My late 40s were marked by debilitating fatigue, tremendous brain fog, aching all over, burning in my feet and tingling in my hands, skin rashes, joint pain, chest pain, heart palpitations, mood changes, and poor sleep. I know what it’s like to start and end every day feeling like you have a terrible flu. Over several years, I experienced virtually every known symptom of Lyme disease.”
Dr. Hirsh has done over 100 podcasts.
The speakers aren’t johnnie-come-latelys. They’re experienced doctors who’ve been scouring the functional medicine field for years. Dr. Teitelbaum, the author of many books on ME/CFS/FM, will discuss limbic dysfunction. Dr. Evan Hirsh (the “EnergyMD”), who is on his 110th podcast (!) has covered everything under the sun. Drew Kidder’s “Vibrant Wellness” functional medicine podcast is on its 75th session.
Dr. Taylor Krick, autoimmune patient and doctor who now treats autoimmune diseases from a functional medicine perspective,is coming up on his 60th podcast. Dr. John Lieurance, a chiropractic neurologist and naturopath will be speaking on methylene blue and melatonin – two subjects he’s recently been devoting podcasts to.
Along with the functional medicine side are a series of emotional/trauma/healing talks, three of which focus on breathing practices – which are now being embraced by a variety of practitioners including Dr. Putrino at Mt. Sinai. They can help speed oxygen to our tissues, calm down the autonomic nervous system, and reduce fight/flight. Dan Neuffer, Ashok Gupta, and Raelan Aegle – all former patients who have recovered – will talk about how retraining the autonomic nervous system and neuroplastic techniques can assist recovery.
Lorrie Rivers will lead several sessions on her favorite technique – the Emotional Freedom Technique (EFT) – to help with sleep, emotional well-being, and fatigue. I’m kind of the lone man out – no treatments on offer from me – but I’ll speaking on my usual topic – the latest research – with an emphasis on how our understanding of nociplastic pain is informing these diseases. Several recovery stories dot the Summit as well.
These Summits aren’t for everyone, but if you have an interest in functional medicine and/or mind/body techniques, this one might be for you.
Registering
RegisteringYou probably know how it goes. Register for these Summits for free and you can watch every talk on the day it’s presented. Buy the entire package (for $97) and you can download and watch them at your leisure.
The “Long Covid and ME/CFS Holistic Healing Virtual Summit” runs from Nov 8th to 10th.
You can register and/or buy the entire package here. (Health Rising receives affiliate sales if you buy the package.)
- Also check out some “fatigue freebies” (Hidden Infections, “Beditations”, “11 Self-care practices”, that you can download, as well as some success stories.
No thanks
While I’m unfamiliar with many of the Summit participants, there are a few I easily recognize as longtime members of the ME community, including the host, and I don’t believe they are “scammers” in any sense.
Perhaps it’s an understandable reaction to be frustrated by these kinds of talks when we’re waiting for the “magic bullet” answer to come from medical research or big pharma. However, until that day comes (if it does, in our lifetimes), if able, we’d do well to keep an ear to the ground & maybe give some of these programs a try.
I personally know and trust 2 people who have recovered fully from ME using “brain retraining” programs (at least 2 of the founders of these types of programs are part of the Summit). One was ill for almost 40 years and the other for about 4 years. I find that hopeful!
Just great – brain retraining and breathing techniques. Why are scammers being lifted up?
I wonder what percent of entrenched ME with PESE and fibro cases they work in.
If you check out these type of recovery stories on Raelen Aegle’s youtube channel you’ll find a surprising number of people who were really ill. It’s kind of astonishing at times!
Thank you for mentioning her. I’ve just listened to one of her YouTube shorts.
“When we distill it down to its core,” she says, “when we take all of that information that’s out there on this topic, what it boils down to is this one thing:
The cause of the onset of these chronic symptoms, and the fuel for the continuation of these chronic symptoms is JUST ONE THING.
It all boils down to one thing. It’s fear. Fear triggers our bodies’ threat assessment systems. And the body reacts, and alerts us to this danger with symptoms.”
Source: https://youtube.com/shorts/TQQ7ftPz-00?feature=shared
I think it’s possible to believe that psychological fear exacerbates a prolonged CDR response and the other derangements which come with ME/CFS without saying things like the above, but it might make brain retraining and coaching a little more of a nuanced product to sell.
There are definitely people for whom lack of adequate physical and mental rest, and respite from fear and stress was probably the missing puzzle piece in their remission or U-turn, especially in the early onset period. Where this thinking would be especially helpful is in policies around those who are newly ill and attempting (or being pressured) to return to work/studies/sports too soon.
ENOUGH with these snarky comments. With what recently happened to Dr. Eleanor Stein after being falsely discredited, it is time for our community to hold ourselves and each other to higher standards of behavior. https://www.eleanorsteinmd.ca/blog/canmebecuredwithneuroplasticity
If these approaches are not for you, fair enough. Please remember that many, many patients with decades of entrenched illness, knowledge and experience find benefit from these techniques. These verbal assaults aren’t just toward the program providers. They are toward fellow patients. We have suffered enough disrespect from the research and medical communities. There is no need to add further trauma by disrespecting each other. As those of us with experience know, what works for one will not work for another and vice versa. As someone with 18 years of illness who has used mindbody approaches for 11 years, I can say that they haven’t changed the fact that I have ME but they have significantly changed for the better how I experience ME. I wouldn’t be where I am today without them. Please allow grace for each person to decide for themselves what is useful and what is not.
Michele, don’t you dare try to tell people what they can or can’t say. I’ve been Ill for 18 years and tried Annie Hopper’s program and it did nothing. I really don’t know why I thought it would work. After all, it’s nothing more than repeating certain words while standing in different positions and visualization. After I tried it for a while, I felt utterly foolish and stopped. We need real treatments, not mind-body foolishness.
Please just keep in mind, Gail, that others have been helped. I wasn’t kidding when I wrote that Raelen has almost 200 recovery stories on her youtube channel.
I tried DNRS as well and it didn’t help by the way -but that’s how it is with most treatments – some people do well while the rest of us search. Good luck on your continued search!
Cort, I believe if someone recovered from ME/CFS through brain retraining, that they never had it in the first place. Maybe it was truly in their heads.
Other than your gut feeling I don’t see any reason to believe that. Some of these people are tremendously ill – ME ill – not depression ill or anxiety ill.
We know from studies that ME/CFS – which has its own unique symptom profile that is very different from depression/anxiety – is not in any way caused by depression.
Study after study has shown that. Until it’s proven otherwise the safest explanation right now is that they had what they seem to have – ME/CFS.
Thank you, Michele. There is no reason to discount the fact that some of these things help people cope, and no reason to treat anyone with disrespect. It’s FREE, and anyone is free not to attend.
Please, let’s not be the monsters some have made us out to be in the past. I can’t imagine wanting to help people who are rude and disrespectful in the face of free information. It’s not like we’re being asked to buy anything unless we want to purchase all the full recordings to watch as many times as we wish.
Thank you to all who have participated and worked to offer this information.
Such a shame nobody believes in what I do, as it actually works, multi dosing low dose naltrexone. One day it will be the normal treatment, 50 yrs from now probably.
Hi Vanessa, I can’t function without my Low Dose Naltrexone, but I only take it once a day. What do you mean by multi?
Hi Tanya, did you get to read my other comment here, and I have several on other health rising posts too, basically the more often you take it, the more you can do, way way less fatigue, pem etc, i now use it every hour 6mls on the first hour and 3mls on the second, I’d happily do 6 every time with great results but can’t obtain that much, at first leave 3 hrs between doses, the body becomes tolerant to it a degree. It keeps calcium ion channels opened this way, small amounts of caffiene help calcium influx and mediate any lows, I presented my abstract at the International ME conference in Australia, email me if you want it. vgray1221@gmail.com
50-100mg is NOT LDN, it’s Naltrexone and over the recommended dosing.
Vanessa, I’ve tried LDN more times than I can count and always end up feeling worse and frustrated. I’ve taken it at night in the morning and everything in-between.
I’m glad it works for you and many others, but you must understand that LDN does not work for many sufferers of this illness.
Hi Chris, it dosent work once a day, it needs to be taken every few hours to keep calcium ion channels opened, small amounts of caffiene help with it. It never worked for me until I did this, I use 100 mgs over 24 hrs, you have to understand how it works, all the best.
50-100mg is NOT LDN, it’s Naltrexone and over the recommended dosing.
Well said!
There are probably dozens of causes of these “syndromes” and what works for one person won’t help many others. That doesn’t mean people shouldn’t have the option to learn and try new things. These people have all had these issues and are telling you what worked to heal them. If you have tried them and they didn’t work for you or you don’t believe they will help, they likely won’t. The mind/body connection is much stronger than we know. I highly recommend everyone spend their money on getting genetic testing done first, before anything else. Address any issues that come up through that. That testing will also tell you what drugs to avoid. (I can not take methylene blue without risk of severe harm!) Then clean up your diet and get some testing done to make sure you are not deficient (or taking to much) of necessary vitamins and minerals, After that you can start trying other supplements and practices as suggested by others. It doesn’t hurt to listen to these people as long as you take what they say as “their” experience and realize they are NOT you. High dose thiamine helps me tremendously. I’m 85+% functional on it. Chances of it helping you are low. But knowing that would you buy a $7 bottle of Vit B1, take 300-1200mg a day for a week, and see if you are “cured”? I did and I was, thanks to post by Cort a couple years ago. Please keep an open but critical mind. I hope you find something that works for you! Blessings.
Congrats! Isn’t that something! 🙂 That’s why we must keep trying things 🙂
Yes, big thanks to cort and this forum. That’s how I discovered LDN I got 85+% of my life back!
@T Allen,The genetic factor was also important in my case. Since there are several cases of autoimmune diseases in my immediate family, I concentrated on meds that would target neurological elements. I believe LDN targets the glial cells in the bain.
Keep trying things indeed !
There you again – another treatment that really helped – nice! For all of us who haven’t found something like that – let’s not forget that this can happen…
Hi T Allen,
Thanks for sharing your experience – would you mind saying which genetic result (a SNP?) warned you about methylene blue, based on your genes?
Thanks!
G6PD Google for list of drugs to avoid if you have it!
Thanks!
Hi …do you mind sharing what Snp (s) affect methylene blue metabolism ? I’m afraid to take it . I do have genetic test results.
People with a G6PD deficiency should not use it. I’m a carrier of recessive so I won’t chance it. Here’s a good article, scroll to the very bottom for the list of who should not use it. https://bengreenfieldlife.com/article/the-ultimate-guide-to-methylene-blue/
Thanks for the resource. I added it to Health Rising’s blog on MB. 🙂
“G6PD deficiency: G6PD (glucose-6-phosphate dehydrogenase) deficiency is a genetic condition that affects red blood cells. If you have this condition, taking methylene blue can cause the red blood cells to break down, leading to a potentially serious condition called hemolysis. Therefore, if you have G6PD deficiency, it is generally recommended to avoid methylene blue.” https://bengreenfieldlife.com/article/the-ultimate-guide-to-methylene-blue/
I think we will give high dose thiamine a go. Nothing to lose.
I see a trial found quite significant benefits in IBD with fatigue as a significant symptom.
I also see that thiamine can increase ATP.
Lots of treatments seem to be aimed at pain. For my daughter (and to a lesser extent me), fatigue is our only really troublesome symptom, so have been trying to find things that help with that.
LDN doesn’t seem to be helping. Again it seems to help people with pain symptoms more than fatigue.
Just a tip. The thiamine must be taken all at once, not spread out throughout the day. I will post the research late after I get home. Praying it works for you! Also Solgar amino acids (or another similar product) is supposed to help energy too. It’s worked for me. I stated taking digestive enzymes with every meal in case that was the problem and since then haven’t needed the AA as often.
Here’s the report on how High Dose Thiamine works: https://www.eonutrition.co.uk/post/mega-dose-thiamine-beyond-addressing-deficiency
Thanks, great article. I will be the family guinea pig, if it works for me will try for my daughter
Holy holy holy shit! I was taking a mega dose of 1.75mg for one week. 1g morning and 750mg at night. On day six I felt amazing. Physically, mentally and emotionally just…….zen. Like I had high energy but also had high regulation. These things often don’t go hand in hand for me.
I’ll be starting another week of high dose in a couple days time, maybe it’ll become permanent.
Speaking of which, the linked article mentions a few times that some of the enzymatic slowness may be reversed. Do you have any info regarding this part? It also says that megadoses may be required for life so I guess that rules out any reversal…..
Also, do you know of any genetic links with faulty thiamine enzymes? I have my raw DNA file, maybe I can upload it somewhere and find out more.
Fwiw, the mega dose of thiamine was as part of a targeted gut microbiome hacking effort via cfsremission.com and sister site Microbiome Prescription. Not sure it’s working for me yet, but the potential thiamine finding could be pretty huge on its own.
I’ll look for the genetic info. Busy week so it’ll be a few days. In the meantime beware of too high doses. Start tapering back until you find the lowest dose. I take 300mg a day with an extra 100mg 3x/week.
Per Chris Masterjohn on Substack:”Excessive thiamine supplementation would not be expected to directly interfere with the absorption of other nutrients, but it could puts stress on four metabolic pathways that either creates an imbalance with other nutrients or worsens a genetic impairment, and it probably generates sulfite within the human body. Sulfite is toxic, accelerates glutamate excitation of and damage to nerves, can degranulate mast cells and cause pseudo-allergies, and the process of generating and detoxifying sulfite puts stress on the requirements for coenzyme Q10, glutathione, molybdenum, and copper. It could also worsen mitochondrial dysfunction by backing up the mitochondrial respiratory chain and inhibiting short-chain fatty acid metabolism.”
Thank you!
Interestingly, the research on chronic fatigue in IBD found that people who had higher levels of certain beneficial bacteria in the gut responded much better to thiamine for fatigue. People with ME/CFS tend to have lower levels of these bacteria anyway. So might try a week of prebiotics first.
Prebiotics are just food for microbes. Very beneficial but It’ll take more than a week to get results. And you don’t know what you are feeding. If you’ve taken antibiotics you may to need to take specific probiotics to get the depleted species going again. I’d suggest getting a stool test done by Genova Diagnostics. Very comprehensive data returned! See demo: https://www.gdx.net/education/2020/03/interpreting-the-gi-effects-profile
Just took first dose. 500mg.
Will do this every day for a week.
Good luck! I knew in 3 days!
I think I will up it to 800mg. Do it once, do it right
An early observation- I seem
to feel very calm and somewhat happy after the thiamine. Do you get that?
Not that I really noticed but I’ve never taken that high a dose. Maybe I should try it with the chaos right now. 😉
Is there a resource or a list for genetic tests that are valuable for ME? I would love to determine if certain medications would be useful or not because I have suffered severely from side effects (last time LDN. I am still mad that I didn’t stop at 1 mg and dosed until 4.5 mg)
I agree with you.
There are so many groups on facebook promoting such methods.
Chronically ill people, that are desperate to recover, are paying thousands of pounds for one or another of these unfounded pseudoscience methods. They shouldn’t be promoted in my opinion.
There’s always this “bilking ME/CFS patients out of their money” theme but relative to other treatments these courses are actually quite inexpensive and they usually come with money back guarantees. (I wish I could get that from my doctors!)
Thousands of pounds? I don’t know where you got that from but Dan Neuffer’s and Ashok’s Gupta’s courses are $500 US – $388 pounds UK. That’s also the end of road regarding money – from then on you can do them yourselves.
I’ve spent far more than that on tests, vitamins, prescriptions over time.
Besides if you’re looking for a recovery it’s probably going to be one produced using one of these techniques. Only Health Rising has a list of recovery story using other techniques – and honestly, they don’t seem as plentiful.
They’re not! There are no scammers in this Summit. Ashok Gupta used these practices to recover and two small independent trials found it helpful.
https://pubmed.ncbi.nlm.nih.gov/37492483/
https://pubmed.ncbi.nlm.nih.gov/38404605/
Many studies have shown that mind’body practices can be helpful in relieving pain – and a blog is coming up on that.
Doctors like David Putrino at Mt. Sinai use and have tested breathing techniques and found them helpful in these disease. Disrupted breathing patterns can result in CO2 reductions and symptoms similar to those found in these diseases – so it makes sense to try them.
M of the Summit is on functional medicine practices – and
Hi Cort, I am not sure whether you’re aware that practices like yoga and meditation – when used sensibly – work in every disease to support wellness and recovery. This was already clear in the 1980ies and there is no need to do more research on that question. However these practices are not a therapy.
I also find it dangerous to claim that these practices can work as a therapy in underresearched illnesses like ME/CFS. Not every one has the resources or the health to immerse themselves full heartedly in such practices. And it is wrong and not acceptable to claim that these people are not recovering because they’re not doing their yoga.
This comes from an ME patient who has practiced yoga and meditation for 15+ years and ten years prior to becoming ill and uses these practices as one of their most important recovery tools.
Well, the many recovery stories suggest they can really help some people. It’s clear, on the other hand, that they don’t help many. I tried two of the practices and go not relief. For me, I would think they are probably nice adjuncts to other therapies which, if you put together, can provide more help.
Why would you promote quacks?
I don’t promote quacks – my commitment for Health Rising is to provide anything that might be helpful and the hundreds of recovery stories using mind/body techniques found the internet attest to the fact that they can be helpful. (Check out Raelen Aegles YouTube page.) Therefore, mind/body practices will show up from time to time on Health Rising.
How can anyone be so prepared to smear others when they don’t have enough information to support their criticisms. Or be so prepared to deny the possibility that these programs have helped and will help others. No one is forcing you to partake of anything.
I went to sign up and it said this summit started yesterday, October 28. Am I late then?
Yes. And I’m annoyed that I only received an email on this summit a day after it started. It’s free if you watch in real time, but you’ll miss Lorrie’s and other’s presentations. What? Seems it could be meant to be sent out after it started to encourage people to pay to catch up with the beginning!
As much as I believe there can be value in functional medicine, I’m wary because manipulative sales tactics can be used by some touting cures who are exploitative-the internet has many. Or someone was late in presenting this. Why?
Now where is that meditation download I’d been listening to lately..?
Sorry about that. I was late to getting the news on this course out and so Lorrie suggested I write about the reset weekend from Nov 8-10th. Apparently, they did not update that page.
I will find out what to do next.
Thanks Cort, for acknowledging possible snafu on this.
I’d add that I had root canaled teeth removed. Before then I was suffering from spasms that pulled me to the ground. Very scary. I ended up in the emergency room and on opiates . Thank goodness I wasn’t given a prescription..I’d certainly be an addict. After that I figured replacing a few mercury based fillings would be a good thing also. Spasms gone after all removed!
So, despite a lot of silver bullet fantasies with pharmaceutical and alt stuff. I’m doing organic plant based food..and I don’t think gluten is an issue as much as what kind of gluten. Yes, there is for instance, Einkorn wheat which has a different form of gluten from our standard gluey wheat. Look up if desired..I use that, and making flat bread from lentils or garbanzo beans.
Meditation downloads by MeditationalState from Utube has been a game changer for my sleep, as have finding led bulbs that have high cri and are flicker free..
Thanks again Cort for your response, I understand, and have a lovely day!
The meditation downloads have to do with binaural beats btw
Sorry about that. I was late to getting the news on this course out and so Lorrie suggested I write about the reset weekend from Nov 8-10th. Apparently, they did not update that page.
I will find out what to do next.
I’d just like to say, mind body stuff is great, it helps me some but dosent stop my ME. Although I’m open to more of it, I’m a bit of a workaholic though, but working on that, only can because of ldn unconventionally, 7mls every 2 hrs, best thing I’ve ever done, hate resting after doing it it for 7 yrs, but I do try. Also Lyme is different to ME, from what I’ve seen. In fact my new dosing is 6mls at the first hour and 3mls at the second, I have zero pain, fatigue, pots and pem, I’m still not normal, but can take short walks, run my business, stand and cook easily for hours if I wish, hang washing, light yoga, ldn opens calcium ion channels.
LDN helped me too Vanessa. If you are taking it in mls I assume it’s liquid? Are you having it compounded? I was taking it in capsules and the dosages didn’t agree with me well. Or the routine. I may try it again to deal with MCAS. Can you refer me to a resource for your product and the timing of dosing? Thanks! I’m glad it’s working for you!
Gupta really? Brain retraining and people who healed from ME? Sounds scammy to me
Check out Raelen Agle’s, Ashok Gupta’s and Dan Neuffer’s Web/Youtube pages and you’ll find many stories of people who have recovered. Raelen does a couple a week and has around 175 stories at last count.
While the comments are focused on the mind/body presentations they make up maybe 20% of the course – the rest is on functional medicine.
Hey T Allen, please read my other comments on health rising posts or email me and I will send you my abstract I presented at the International ME conference in Australia. Thanks Vanessa
vgray1221@gmail.com
what I notice is that many are reluctant to listen to these holistic approach therapies. one has to realize that we function holistic, MECFS, longcovid and other PAIS are multisystemic diseases and holistic lifestyle (including mental) treatments are likely the most powerful therapies to get as close as possible to a cure.
The difficulty here, however, is that, due to clinicians inability to understand these syndromes, they concluded that the problem was all ‘in the head’, which is often conveyed to and/or interpreted by patient as that they are considered mad. The now present perception that it must be biomedical (which is now wrongly interpreted that it can not be even partially mental), may prevent improvement of the patients condition, as when one has the perception that a treatment will not work, it likely will not work. that is the power of the brain and the strong effect of nocebo and/or placebo. As such, and as long the underlying mechanism is not understood (where we work on if support allows us), I would suggest every patient to be open minded on the possible effectiveness of holistic therapies. this, because I want the best for all of us.
Can you also cure cancer or HIV with your approach or therapy?
Gijs, I couldn’t agree more. Since they have not discovered the cause of the ME/CFS (or maybe they actually know) that started on both sides of the country in 1981, we have no idea what illnesses these “claimed” cures had. And have these cases ever been revisited to see if they are still okay.
I had a remission for a while with Dr. Cheney’s cell signaling factors. He called them stem cells in a , but this disappeared when I got Covid twice in the same year.
In a prior post, Cort reported on a number of studies showing something in the blood can cause ME/CFS symptoms in test animals and muscle tissues. Are the animal’s recoveries linked to mind/body work?
Certainly, a positive attitude can help with any health issues. Think Norman Cousins’ “Anatomy of an Illness”, but he also took very high doses of vitamin C in addition to watching funny movies. He could also afford to stay in a hotel and receive this treatment while many ME/CFS patients suffer at home with limited assistance.
There are several studies this year that I have been hoping Cort would report on rather than promote the same old-same old.
Hi Betty,
I think that you are really not going back enough in time with ME/CFS starting in 1981 in the USA. Indeed, the concept of neurasthenia was introduced by George Miller Beard (an american neurologist) in 1869 and is now called ME/CFS nowadays.
https://pubmed.ncbi.nlm.nih.gov/12410427/
That’s a false analogy because ME/CFS is not cancer or HIV – or anything close to them actually. It’s not “allied” with either of them. The diseases it’s allied with like fibromyalgia, IBS, migraine, and long COVID – clearly involve an upregulated fight/flight response, dysregulated autonomic nervous system, amplified pain response, and altered central nervous system.
The immune cells in ME/CFS are not getting blasted away as they are in HIV – leaving them open to all sorts of secondary infections – and obviously people with ME/CFS don’t have a bunch of cancer cells in them.
You might as well say – can treatments for diabetes cure HIV – and then dismiss them for not doing that.
Hi Cort, Actually, ME/CFS has been associated with increases in lymphoma. “CFS was present in 0.5% of cancer cases overall and 0.5% of controls. CFS was associated with an increased risk non-Hodgkin lymphoma (NHL) (OR=1.29, 95% CI=1.16–1.43, p-value=0.0000017).”
And there are ME/CFS cases that fall into the category of non-HIV AIDS. These cases were monitored by the CDC and Dr. Cheney had a number of these cases as well. Ref. Osler’s Web.
These are not stats any of us want to think about, but they are in the literature.
My understanding is that those situations are very very rare.
The science is showing that, overall, biological abnormalities in this illness are generally much more subtle.
I was reading an impressive paper in pre-print yesterday done by researchers at the University of Edinburgh, they have analysed thousands of patients’ medical samples. While they found some significant variations, they also found some consistent abnormalities. These indicated low grade inflammation, some liver issues and ‘insulin resistance’. It’s all indicating a few systems are a bit out of whack but none massively so. I was very interested in the liver findings, as especially earlier in my illness I had poor liver function.
Funny enough, although I have dismissed it in the past, repeatedly, I am starting to wonder if viral reactivation really is meaningful in this illness. Several systems being moderately out of whack, as shown by the Edinburgh study, with possible links back to viral factors (EBV can affect liver, right?)
As to the main topic of this piece – I do think mind / body approaches can help some people. But not all, for sure
Mattias and Cort,
Around 1981, I became ill with chronic tinnitus, infections, reactions to all kinds of chemicals and foods and horrific headaches. I also had fatigue that can be described as a cement truck suddenly dumping a load of cement on me.
I went to two local immunologists in 1984. At that time, I had 372 T cells and a complete reversal of T-4/T-8. It looked like AIDS, but was not. The CDC monitored around 100 patients like me and Dr. Cheney had quite a few as well. https://www.bmj.com/rapid-response/2011/10/30/non-hiv-aids-now-one-percent-aids-cases
My doctors immediately put me on a form of anti-coagulant obtained on orphan drug status from Germany which makes sense in light of recent studies of something in the blood of ME/CFS patients.
In 1986, Drs. Ablashi and Salahudin, who were working in Gallo’s AIDS lab, discovered a new virus that was so lytic they couldn’t keep cells alive long enough to study it. When they resolved this problem, they discovered that the virus was killing B cells so they named it HBLV (Human B Lymphotropic Virus). Then for reasons unknown, they changed the name to HHV6 and then subdivided that into HHV-6 A and B.
HHV-6 B is ubiquitous infecting 90-100% of the population and a common cause of childhood roseola. The rate of HHV-6 A is unknown because testing can only be done at costly specialty labs.
This is what the CDC says about HHV-6 A. “Molecular analysis showed a higher prevalence of HHV-6A but not HHV-6B or HHV-7 in CFS patients (64,101,102), and HHV-6A could also be isolated from these patients (103). Whether this reflects an association, or the consequence of an immune dysregulation remains to be determined.” (It would seem that immune dysregulation would allow any number of herpes viruses to be isolated, but this was not true.)
There are a number of scientists who believe that HHV-6 A is an entirely distinct virus.
This is of concern to me because I am positive for HHV-6A.
In 1992, I called Dr. Robert Haley (UT Dallas) and told him that I thought Gulf War Syndrome was caused by a combination of HHV-6A and exposure to a pesticide, specifically Dursban.
I believed this because before I got sick I had been in San Francisco, one of the epi-centers where ME/CFS started and our home had been treated inside for fleas with Dursban. I was working out of the house in those days, so I had a greater exposure.
According to one of our scientists, the late Dr. Janette Sherman, Dursban is an organophosphate with a chlorinated structure so it may be stored in body fat. In addition, we found one animal study that showed that Dursban can enhance the accumulation of mercury. https://pubmed.ncbi.nlm.nih.gov/10630569/#:~:text=Previous%20studies%20have%20demonstrated%20that,the%20elimination%20of%20methyl%20mercury.
My symptoms were so much like those of Gulf War veterans that I thought HHV-6 A and exposure to Dursban, which was widely used in the Gulf, could be the common factor. Of course, there were many other pesticides and potentially nerve gas agents in the Gulf environment, but since Dursban is no longer on the list of approved pesticides for the military, we are not seeing more cases of Gulf War Syndrome or the same birth defects we found in our original studies.
I didn’t mention that in 1986, I had started a local support group for ME/CFS and I prevailed on my doctors to send the Gallo group blood from our group cases and a family member that was not ill so they could be tested for these new viruses.
We did this at our own expense, but the Gallo group refused to give us the results no matter what I could think of to influence their cooperation.
For many years, I have used the antiviral Nexavir which (according to Dr. Ablashi) is active against HHV6A. It is a new form of Kutapressin that can be purchased from the Nexco company without a prescription in the cream form.
Nexavir is being used in Long Covid also.
The symptoms of this illness are neither benign nor imaginary. I almost lost my right leg from an infection in a tiny cut that spread into cellulitis. It took 5 months for the doctors to figure out what the infection was and treat it.
In trying to deal with multiple chemical reactions, I also went for testing for mast cell disorder. I was reactive to a large number of chemicals so they tried me on a combination of two low dose antihistamines, Tagamet and Singular. This treatment triggered glaucoma which is bad enough, but following laser surgery to try to deal with the glaucoma, I had a ruptured artery behind my eye that connected to the vein. This is a medical emergency where you can have a stroke or lose the vision in one eye. A specialist did an emergency operation that involved threading instruments up the veins of my groin into my brain and separating the artery from the vein with platinum coils. The vision in my left eye is deteriorating and if anything happens to the right, I would be functionally blind.
Since I got Covid twice in the same year, my balance and ability to walk have been impacted as well as my heart and blood pressure.
So spare me the tales of body-mind work that would not have saved my life in any of these instances.
Hi Cort, the best supported hyothesis that we have so far is that ME/CFS is a smoldering form of HHV-6b reactivation. Which is actually comparable to HIV/AIDS. Just as AIDS, ME/CFS most likely is a chronic viral disease.
Your idea that ME/CFS has a connection to “fibromyalgia, IBS, migraine” strucks me as a fantasy. These diseases have in common that they are underresearched. And the causes for that are to be found in political processes. It doesn’t mean that these ilnesses have something in common.
I remember that Klaus Wirth claimed something similar here. This idea of the two of you is some kind of fallacy – maybe because you believe that science and politics are two different things.
In reality, they’re not. That’s just an ideal.
I said that based on the research actually plus the fact that those diseases are all common comorbidities of ME/CFS.
You’re missing the point. It is always these types of therapies that seem to be able to cure vague, non-objective diseases and ailments. Hence this comparison. That doesn’t mean that meditation and relaxation can’t be useful. But some people and therapists go overboard with holistic thinking.It is a business model for many therapists. Just as vaccines are a business model for Pfizer.
What I’ve learnt over the last 38 years with this illness is that “functional medicine”, “holistic approach”, “brain retraining” and other “alternative whatsoevers” do not really require an open mind, but mostly an open wallet.
We have gone over this again and again and again and still it crops up. I guess my question to you would be how much money have you spent on supplements or other treatments that didn’t work?
These are actually some of the least expensive treatment approaches, Dan Neuffer’s and Ashok’s Gupta’s courses are $500 US – $388 pounds UK and both come with money-back guarantees. That’s also the end of road regarding money – from then on you can do them on your own – no vitamins, drugs to buy every month.
Hi Cort,
I don’t agree with the argument that because in the past we spent x thousand dollars on something that did not work, then it is justified to spend another $500 on something that ‘may-work-who-knows’, keeping in mind in a year another $500 miracle “treatment” will pop up, and the cycle keeps repeating.
In my view, it was wrong in the past to sell and make patients believe some lotions and potions may work based on some obscure anecdotal stories, and it is equally wrong today to sell us another batch of lotions and potions that may work based on some other obscure anecdotal stories.
It is not only the financial aspect of things, it is that perpetual emotional roll-a-coaster that patients have that soon they will have a life again, that they will be able to do this and that, all those things they have imagined over the years and decades, when in reality, the chances of success are less than 0.1%.
Then, there is also the stigma (aka. less research funding) when a patient says ‘nope’ to these so-called “treatments”. We are then told we don’t want to get better. And if we spent the money to the point it causes hardship and it does not work, we are told “well, it was obvious it was a scam; ME patients are such idiots” (ie. why spend research money on that kind of people?). And even if it does not cause hardship, we’ll be told, “after trying 10 different treatments and nothing works, it is probably because you have nothing”. And I am not even talking about all the “treatments” that make people permanently worse…
All in all, it is my humble opinion that even though these “treatments” may help 0.1% of patients, it causes a huge disservice to the vast majority of the ME/CFS community. That said, others may say that 0.1% is better than 0%, even if the remaining 99.9% are a bit worse off as, after all, they were already ill anyway.
Of course, people are influenced by their own circumstances. For a 20 yo who’s been ill for 2 years, it is clear that a lot of emphasis will be put on the 0.1% chance, and for a 70 yo with 4 decades of illness, the emphasis might be more about finding a proper treatment for the next generations.
Some of us have infection, some of us have parasites,while others may have traumatic damage,and still others had an accident that sent them into me/cfs.
I think this is why we have these people in disbelief that a certain treatment as simple as brain retraining could pull us back to health.we are all so different in many ways.
Mine,we’ll, my brain is swollen from I think 2 whiplashes, one of which sent my head clean through the rear window of my half ton truck window along with a pathogen way back in tge fall 81′..
Just bad luck
Think subgroups
roonie I too had a pathogen in the fall of 81 and just 18 changed my life from then. So sick ….. dr called it a super flu. Over the years 2 things taking responsibility for my health and lifestyle path and being body /mind aware . It was only through trying so many holistic approaches that I can live mindfully. yes still many dark days yes still in pain and weirdly healing injuries. And new young GP Dr who wants to sometime talk about my fibromyalgia…..that’s still being conceptualized….. here in Canada there is still such a disconnect. Finding a balancing act without disparity….the mind is a heavy playwright.
I wanted to watch this Lorries healing free but where is the free ??
Leesa, not sure if you know ,but, many people got sick in the fall of 1981.
It took me a long time to find this out.
Maureen Hanson (researcher) talks about this date in history that so many fell ill
Yes,today’s marketing,I’m afraid has left a sour note in my mouth as well.
Not much truth left in the world.
These people that pull these (free)shenanigans are shooting themselves in the foot
I just keep thinking to myself,why would a dr.on the internet that’s trying to make money or get rich, be spilling the beans on how to get well.They are no different than all the other docs…a sick person is a person to profit from. I learned this a long time ago.The few good honest ones don’t scam/lure people into paying by offering something free that doesn’t exist. Get some scruples Laurie and clan.
The sooner we learn that a large majority of the industry is praying and trying to profit off of sick and desperate people,the better off the entire world will be.Take it from a guy that has been milked for decades.And they wonder why we turn to the internet for answers
Not all Drs on the Internet are frauds. There are a lot out there, but some good ones too. When I got sick in 2015 from a tick bite and thought it was Lyme, I was denied treatment by the VA so went searching online. I had kept a “quack”list. Which didn’t leave many other options. Now there are many more good Drs. One, who helped me a lot, Dr Marty Ross MD has retired from having a physical practice to spend full time helping people online. I have never heard anything that I would remotely challenge as he helps people with tick borne diseases and the associated issues like POTS, MCAS, and fatique syndromes. I agree it’s hard to know who to trust. These fields are changing rapidly and good Drs are learning and changing as new research comes out. Just because they are online doesn’t make all of them Quacks!
If you click on the link in Cort’s post, it takes you to Lorrie’s website. You then click on the link “Free access Oct 28 – Nov 3”. It asks for your email address.
Just give them your email address and you can watch the presentations on the day they are given.
But we can disbelieve that healing is possible, no,yes? And after so long in it. Then there is the cognitive realm to deal with, maybe..
Nothing to see, but I haven’t seen anything on the site relating to tinnitus. Isn’t this common in ME/CFS? Am I the only one who has them? I’m talking about it, because at the moment, I can’t stand them anymore. If anyone has a suggestion for attenuations, I’m all ears. THANKS.
I’m thinking of testing the GUPTA method, when it becomes available in French. We have nothing to lose by trying (except money).
Tinnitus is common in ME/CFS/FM – I’ve had it for years – it just doesn’t not seem to come up that much. I guess it’s usually more of an annoyance than anything although if its strong it can be pretty bad.
I’ve tinnitus also, not just an annoying thing. Brain thing? Why not look further into that? Connections? Ignore seems like denial..or discount.
Thanks Cort and Elaine.
I agree with Elaine, if tinnitus is common in ME/CFS, it would be worth looking into it seriously.I can’t find any studies in this direction.
Before my triggering event, at the end of my hockey career, I began getting “full” ears at the end of each shift on the ice. It was accompanied by tinnitus.
When my serious illness got triggered, I had to quit hockey and all intense exertion. In that time I had no tinnitus. But in year 4 post-triggering event the tinnitus returned and now is omnipresent.
As a pigeon rescuer, I don’t like to use the “canary-in-the-coal-mine” analogy. But the outcomes of the canary are pretty clear. Seems to me tinnitus works that way, too.
It is also common in HIV
https://pmc.ncbi.nlm.nih.gov/articles/PMC7059238/
Off topic, but a bit of hope to end the week!
I really like what PolyBio are doing. Young, fresh, nimble and …..funded! We need more of these sorts of people and organisations. Rapamycin trial coming
https://polybio.org/polybio-supports-helps-conceptualize-long-covid-rapamycin-clinical-trial/
Agreed. Polybio is a shining light!
I put MUCH more faith in them than bureaucratic behemoths like NIH
Hi Matthias, Once again the promise of a drug with very serious potential side effects.
“Sirolimus (rapamycin) may increase the risk that you will develop an infection or cancer, especially lymphoma (cancer of a part of the immune system) or skin cancer and there are many others.”
The natural Rapamycin alternative – Quercetin – holds great promise. It can suppress the mTOR pathway similarly to caloric restriction and also provides anti-inflammatory and antioxidant benefits.
I think many people hate everything hanging around ”brain retraining” because it may look like accepting the ”this is all in your head” explanation.
Indeed, many of us were told by bad GPs or specialists with bad will and always going for the easiest explanation. ”As a doctor, I am a god and I know everything and then if I can not explain what you have with all my genial knowledge, it is necessarily because this is all in your head. In other words because you are crazy”. This is not true, none of us is crazy.
On one hand, for many of us, ME/CFS started very suddenly by an infection that may really have screwed something physical in our body/mind (immune system, energy production system, hormonal system, etc). It is then perfectly logical in this situation to expect a medical solution and this is very likely what will hopefully happen sooner than later.
On the other hand, for many of us, ME/CFS rather started from an emotional shock of some kind or a bad handling of life stressful situations over time and then a different kind of solution may then be expected. This is where brain retraining may play a role and this does not mean that any of us is crazy.
The human mind/body interactions are so complex that is is entirely possible that our brain has been affected by these stressful event and has also been changed physically in his structure. It is fully proven by science that stress affects many regions of the brain (smaller zones in size and less active during IRM). The same way, it is also proven by science that meditation changes the brain structure positively (bigger zones in size and more active during IRM – Dalai Lama and Mathieu Ricard).
With such a complex health problem, I do not believe one second that there is a unique solution to this situation. Please everybody, keep an open mind…
I’ll pass
What has always bothered me about these brain retraining and mind body programs is how vague the respective providers name their own problems. Gupta, for example, when he talks in his videos about how he knows what it feels like to live with “the condition”. However, I have never found a video where Gupta honestly explains his own ordeal with ME. He always remains unspecific and on the other hand tells me how much his personal experience is supposed to help me, which doesn’t add up for me.
Dan Neuffer and Annie Hopper tell their stories…and they are pretty rough…