Bruce Patterson MD had made a lot of news with his assertion that very high levels of a chemokine called CCL5/RANTES were directing immune cells to go on the attack in long COVID. Patterson’s first study suggested that a weak adaptive immune response to the virus was causing the immune system, in a last-ditch effort, to recruit large numbers of monocytes to take care of the problem, instead.
Having monocytes do the work of T and B-cells is going to cause damage.
The body would be much happier off using the smart bombs T and B-cells bring to the fight instead of the napalm monocytes do. The monocytes are supposed to hold the line until the cavalry – the T and B-cells arrived: they’re not really designed to clean up the mess after their lines have been breached.
In Army parlance, a similar situation in Vietnam called for a “broken arrow -danger close” strike where an artillery strike just around their position was called in as they were about to be overrun. The hope was that the strike would kill enough of the enemy – and still leave your men standing.
Interestingly, in his recent talk at the IACFS/ME conference, Avindra Nath proposed a similar scenario to Patterson’s: he believes a balky adaptive immune response is resulting in “extremely aggressive” pro-inflammatory monocytes going on the warpath and killing one might say, a lot of ‘friendlies”. The problem, Nath said, was finding a way to turn that pro-inflammatory response off. Once that fire is lit it’s apparently hard to turn off.
Bindu Paul, Marian Lemle, and colleagues fully agree. They recently proposed that a raging free radical fire was causing long COVID and ME/CFS. Unfortunately, simply taking an antioxidant (or a couple of antioxidants) doesn’t seem to help. A more targeted approach is needed. They believe the hydrogen sulfide pathway might provide the answer. A blog on that is coming up.
To get back to Patterson – Patterson has an interesting idea on how to put the fire out and return long COVID patient’s systems back to normal. His studies – which need to be validated – suggest that these hyperactive monocytes are emitting high levels of a chemokine called CCL5/RANTES which is directing them to the endothelial in the blood vessels where they’re producing a lot of inflammation and doing a lot of damage.
Patterson’s idea is simple: stop the show in its tracks by using a CCR5 antagonist to stop the messenger – CCL5/RANTES – from sending the monocytes to the blood vessels. Patterson’s been using an antiviral drug called Maraviroc (Selzentry (US), Celsentri (EU) to turn the CCL5/RANTES pathway off in long COVID patients.
The Leronimab Long COVID Connection
In 2020, though, Patterson was part of a team that included four executives of the Vancouver drug company Cytodyn. Cytodyn used a different CCR5 inhibitor called leronlimab to treat four critically ill COVID-19 patients. The company reported that the drug helped.
(The financial interest statement appended to the paper, however, was hilarious. Apparently, in an attempt to calm fears that they were being less than objective, the four executives from Cytodyn all swore (scout’s honor!) that the financial interest their company has in the drug did not influence their work on the paper.)
Patterson took the lead on a 10-person leronimab 2021 COVID-19 trial that also included members of CytoDyn and others, which concluded that “Our study design precludes clinical efficacy inferences but the results implicate CCR5 as a therapeutic target for COVID-19 and they form the basis for ongoing randomized clinical trials.”
Citing their as yet unpublished results, the company reported they were asking the FDA for “breakthrough designation” to move the drug forward
In June of this year, the company announced they’d made progress in treating long COVID. They reported that a 56-person study showed that once-weekly injections of the drug produced “clinically meaningful” results in reducing a bunch of long COVID symptoms. Unfortunately, post-exertional malaise was not one of them but the list was still impressive (cough, stuffy/runny nose, shortness of breath, tightness of chest, feeling of fast heartbeat, fatigue, muscle aches/cramps, muscle weakness, joint pain/swelling, chills/shivering, feeling hot or feverish, difficulty in concentration, sleep disturbance/insomnia, headache, dizziness, tingling/numbness, sense of taste, and sense of smell.)
They provided no data, however, and no papers were published. In the report, Nader Pourhassan, Ph.D., CytoDyn’s President, and CEO stated that The Gist
The good news is that both Patterson and CytoDyn have reported that their CCR5 antagonists work well in long COVID. Since CytoDyn has tested leronimab in the context of a study they may have a leg up. Neither, though, has published their results. Since Patterson uses a two-drug approach in long COVID it makes sense that using one drug by itself might not produce recoveries. All in all, the report was pretty good news.
If only things were so simple.
The Gang That Couldn’t Shoot Straight
CytoDyn, unfortunately, has quite a checkered past. In fact, CytoDyn has been the gift that keeps on giving for pharmaceutical media reporter Stat News which has feasted on reports of the company’s incompetence and possible malfeasance for several years now.
Things were clearly already bad in July 2020, when, after the FDA refused to allow Cytodyn to even file its application to treat HIV because the application wasn’t complete, Stat News called that “the most damning evidence yet that CEO Nader Pourhassian and other company executives might be misleading investors”. For its part, the company said all that was required were re-analyses of its data and it would provide them “as soon as possible” but a year later has still apparently not done that.
Stat News reported that CEO Nader Pourhassan followed that boner up by telling investors that the company had requested something from the FDA which apparently does not exist (a “conditional” emergency use authorization). Despite reporting “boom times” Stat indicated that the company’s filings actually indicated it was under considerable financial stress. Nader Pourhassian, its CEO, though, was apparently pretty flush: he made $12M from the sale of his own company’s stock.
In Feb. of this year, Stat News reported on a situation similar to the current long COVID one: CytoDyn reported excellent results regarding its COVID-19 trial – but refused to provide any actual data. Again, Stat questioned whether the company was misleading its investors.
It turns out that it may have been. The you know what really hit the fan when CytoDyn reported they were under “federal investigation” and had been subpoenaed both by the U.S. Securities and Exchange Commission and the U.S. Department of Justice over claims the company’s claims to its investors, on YouTube, and in press releases that leronlimab drug could treat severe COVID-19. Stat News reported that the Justice Dept “took the extraordinary step of issuing a lengthy statement on an unapproved drug“.
For their part investors have apparently filed multiple securities lawsuits claiming that the company had made overly optimistic statements about the drug. They’ve also charged that company executives have “unjustly enriched themselves”.
Citing corruption Bruce Patterson and company are trying to take over CytoDyn’s Board of Directors – and the company itself.
In June in what Yahoo News called “a unique filing” a 26-person investment group led by none other than Bruce Patterson MD (and Paul Rosenbaum) made a bid to oust the company’s 6-person Board of Directors and replace them with Patterson, Rosenbaum, and 3 others. A subsequent lawsuit called the present Board “besieged and corrupt,” accused it of unlawfully thwarting the proxy attempt, and of “bestowing bloated benefits on themselves.” Alleging that “dark money” and a “shadow campaign” was involved in the proxy fight, the company fought back, telling its investors that if they voted for the new Board their votes might not be counted.
Good Drug, Bad Company?
We obviously can’t trust CytoDyn’s word about leronlimab and long COVID and the company’s ineptness, if not fraudulent activity has been well documented. Everything suggests it could use new leadership. But what about the drug itself? Is a good drug being held hostage by a bad company?
Bruce Patterson MD and the investment group he’s co-leading thinks so. The investment group stated they believe “leronlimab is an extraordinary drug” that will “save many lives” and create “tremendous value” for the drug company’s investors. They blame current management for creating an “unsalvageable” relationship with the FDA which will not be repaired until new management takes over. Until that happens, they believe a beneficial drug will languish.
Bad practices have gotten in the way of sick people getting drugs before. People with ME/CFS with longer memories saw a similar scenario play out involving a small drug company called Hemispherx Biopharma. Just like CytoDyn, Hemispherx Biopharma seemed like it couldn’t stop itself from shooting itself in the foot. Embroiled in lawsuits, and its reputation in tatters, the company was never able to raise the money for the drug trial many people expected would lead to the first FDA-approved drug for ME/CFS. (The company is under new management for a couple of years).
Thankfully, there appears to be far too much investor interest in leronlimab and the opportunity it presents for long COVID for that to happen. While the legal situation is off-putting the preliminary reports suggest the CCR5 inhibitors may be helpful in long COVID. Stay tuned….
It may be a problem if scientists are investors or owners at the same time. They possibly tend to overstate success and try to take shortcuts. This may also be true for Bruce Patterson. See this presentation:
https://www.youtube.com/watch?v=uSfzhwkByf0
Here he claims overwhelming success for leronlimab – for acute COVID-19.
… which apparently did not plot out in the real world
Now he claims CCR5 inhibition to be a huge success in Long Covid.
Therefore, let´s just wait until we see a peer reviewed publication on the true benefit of CCR5 inhibition in Long Covid… While, of course, we continue to hope that bad companies still make good drugs (just as doctors we don´t like may still be competent doctors…) What else can we do?
Thank you for the background, Cort – Health Rising going investigational 😉
Getting a little investigational Herbert :). Looking at that study (for the first time) Patterson was the lead author. The 10-person study found these things:
“a concomitant statistically significant reduction in plasma IL-6, restoration of the CD4/CD8 ratio, and resolution of SARS-CoV2 plasma viremia (pVL).”
They concluded that “our results showed that therapy with a CCR5 antagonist could reduce the cytokine storm, resolve the profound CD-8 T-cell lymphopenia, and reduce the plasma viral load to undetectable levels by day 14.”
Since they didn’t have a control group, let alone a placebo-controlled group, the results didn’t necessarily show anything and I’m surprised the editors of the journal allowed them to put that “could” in there. They also concluded that
“Given medical triage resulting in patient death and the lack of a placebo control group, we cannot comment on the impact of leronlimab on the clinical outcomes in these patients. ”
https://pubmed.ncbi.nlm.nih.gov/33186704/
The fact that employees of CytoDyn asserted (apparently all over the place) that the drug improved COVID-19 is what seems to have got them in trouble with the FDA and the Justice Dept. The trial simply wasn’t close to sufficient to allow them to do that. The drug may very well be helpful but they haven’t done the studies that would prove that. (Several other trials are or were underway when that paper was written).
By the way a small October study (https://pubmed.ncbi.nlm.nih.gov/33079180/) found that leronlimab produced dramatic outcomes in some patients (but not others) and that ” high recovery rate suggested benefit, and those with lower inflammatory markers had better outcomes.” A 4-person study (https://pubmed.ncbi.nlm.nih.gov/33521616/) reported that the patients “improved clinically as measured by vasopressor support, and discontinuation of hemodialysis and mechanical ventilation.” These studies are too small, though, to count on.
Since Patterson wasn’t, I don’t believe, connected directly to CytoDyn him making a statement is probably different in the eyes of the FDA than company execs. It does seem rather sloppy, though.
You are so right – we need published data on large placebo-controlled trials leronimab and/or maraviroc on long COVID to really make sense of this.
Thank you Cort for the additional information. Here is an example about the way to go – another “miracle story” on a potential Long Covid cure, yet with data underpinning their claims:
https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3879488
It´s only a preprint and its only a N=1 trial (now complemented by another 3 successful cases), but this is a start: a case report full of solid information and a good discussion. Now the scientific community can chime in – and thus things may move forward: more patient observations, more funding (hopefully!), finally an RCT (then, ideally, also with ME/CFS patients…)
At least watching this all go down has some kind of ironic entertainment value. Not implying that this is why you are reporting on it, but the ME community has seen so many highs and lows over the years (Ampligen the XMRV situation) that seeing the same kind of thing happening in Long Covid is a like having a new chapter for the book. Thanks for covering the story, Cort.
I’ve been trying to figure out the intricacies of Pattersons’s connections to various companies to better understand what financial motivations might potentially color his choices, if any. I’m reading a lot support group posts by Long-Covid IncellDx “Long-Hauler Index” (bloodwork panel) participants that deny he has any non-altruistic motivations. But I think this is more complex and would like to shed some light on it so individuals can make choices about their health with a fuller set of facts. To that end I ask the following questions:
Can you elaborate on what you mean by “Patterson wasn’t, I don’t believe, connected directly to CytoDyn”? In the WSJ article from 2020 I read:
“The company hired Dr. Patterson as an adviser, in addition to hiring his company, IncellDx, to provide diagnostic services. CytoDyn and Dr. Patterson said his tenure as a consultant ended in May. CytoDyn also no longer uses Dr. Patterson’s company for diagnostic services.
An April securities filing disclosed that Dr. Patterson was a CytoDyn shareholder.”
–https://www.wsj.com/articles/small-biotech-stock-cytodyn-soars-on-warp-speed-comment-11598456736
Where you aware that Patterson had been an advisor and is a shareholder? Or are you referring to a different kind of connection?
And have you read the following statements from CytoDyn regarding the Rosenbaum/Patterson Group, aka “Activist Group”:
–https://www.sec.gov/Archives/edgar/data/1175680/000119312521232225/d148969dex991.htm?fbclid=IwAR1wsILTK42ZGoJhAPAyHebSWtdk_ArS6Dh_ZcQq7rKGErX5l5yoDRaZ0iA
and
–https://www.businesswire.com/news/home/20210920005619/en/
Have you found any other sources that back up these claims of conflict of interest on Patterson’s part? If true that “IncellDx indeed submitted a written proposal to be acquired by CYDY for a total amount of up to $350 million” I find that worrisome, don’t you?
I see that you included multiple links to the Rosenbaum/Patterson Group court filings and relevant articles so was wondering why the counter argument would not be given a mention. I find the most compelling arguments to be those that address all perspectives and then form and opinion based on the author’s critique of that material.
I believe people are complex and are often motivated by a variety of factors ranging from altruistic to hubris. Case in point: https://www.youtube.com/watch?v=uSfzhwkByf0.
It may not be the researcher’s fault that medical therapies are tied to money and thus they have to get pitched to investors, but it is sad that patients who’s lives and emotions are most at stake get swept up by the ensuing overvaluation and unrealistic optimism that is a part of corporate hype.
I think the dash I added in my previous comment disabled some of my links so here they are again:
https://www.wsj.com/articles/small-biotech-stock-cytodyn-soars-on-warp-speed-comment-11598456736
https://www.sec.gov/Archives/edgar/data/1175680/000119312521232225/d148969dex991.htm?fbclid=IwAR1wsILTK42ZGoJhAPAyHebSWtdk_ArS6Dh_ZcQq7rKGErX5l5yoDRaZ0iA
https://www.businesswire.com/news/home/20210920005619/en/
i have read this article as a verry severe ME/cfs patient laying in bed with great effort and as best as i can. And i ask myself (i forget so much) but with this article, where is health rising gone on ME/cfs? Not only here but ME/cfs is gone exept for the patients who suffer and covid and covid long haulers came. I, like so many ME patients just can no more. 25% really can no more! i am at the bottom of being putting away. I do not know how further anymore. And then i read this. For what? For throwing away my last spoon?There was a 3 day congres on ME. And other things.I hate covid and i hate (sorry for them) covid long haulers that get all the attention and money and research. I, I am one of the lost generation and how lost!!! I was in my 20 yearswhen i became ill, am now 56. At the end of my rope. readdy to be putting away or commit suicide because being putting away here, even makes it worse. cbt, get, psychiatry, etc no adapted homes. And i really, sorry cort, ask myself (you have given me so long hope) why was this even written? Is it just me? has gealth rising becoming a blog for covid and covid long haulers (mostly) as research is?
@konijn, I am so sorry that you are feeling discouraged by the blogging about long haul Covid. I think that many of us ME/CFS sufferers and caregivers are interested and encouraged by long-haul Covid progress because there is so much overlap in the conditions, so progress there is probably progress for us all. One thing that may help on days when you have very limited “spoons” is, when there is a new article, to scroll down to the highlighted box that says “The Gist” and read that summary first. Then if it doesn’t interest you, you needn’t invest time in reading the detailed article. In any case, I am sorry you are feeling really low. I do believe that progress is accelerating and there will begin to be more and better solutions soon for you and so many others who are suffering. Wishing you well.
give you answer as soon as possible, no sppons and total overload but thanks!!!
Hi Konjin
There have been a lot of blogs on long COVID lately and there will be more but I’m not giving up on ME/CFS/FM/POTS etc. I can understand some upset regarding this blog as the other blogs feature things that are pertinent to both ME/CFS and long COVID but this one is really much aimed at people with long COVID. Not much ME/CFS in there.
Don’t worry – there’s a lot going on in ME/CFS – including the IACFS/ME conference – which I’ll start to cover when the video’s become available. Two things to look forward – two more workshops/ webinars are showing up. In short, there’s a lot going on. I have the feeling that is going to grow and grow.
Please hang in there Konjin. Things are happening – not as fast as I or anyone would wish – but things seem to be picking up.
thank you cort for your response! wich webinars if i may ask? I have also because i live in stupid belgium (it is not only belgium) that we are in the stoneage if i copare with the US and that is for many allready horrible if i read 25%ME fb. my gp even does not want for excample try low dose abilify, LDN, was when i could never tested on POTS,OI, etc, no mestinon, no symptom treatment even, does know nothing about it and is not interested. One would say, take another one, but it is the same. It is as if everything keeps hanging in the US and UK and where omf has centers, was it sweden? In the netherlands 1 cardiologist, in germany scheibenbogen who only takes patients from berlin and one town around. here, nothing happens. no education, no media, etc. yes, still cbt and get or psychiatry. even long haulers, you maybe hear/read in all that time 2 times. heard it from someone. just like chronic lyme desease does not exist.
I asked long time ago because of donations linda tannenbaum omf if someone would come to belgium to speak to politicans if they found something. her answer was, you get updated and that is it. but on this way, i can tell gp’s everything, they will not prescribe, even not specialists. So of all what is happening, it is not here and i see darkness and no change, no outway.
I also meant, when you are on the bottom: you are alone, severelly bedbound 98% of time, live in a house that falls apart but are unable to move, can not wash yourself almost but because of severe sleepdisturbance (and gp would put me away) can not cope with nurses at home, have trouble eating, can totally not go outside for rgular specialist like for dentist, gyneconoligt, need them urgently like cardiologist for ME or not for ME, etc, can even not cope with 4 hours of lazzy help who is the princess here (here they are no longer educated) and when my father still lived he had an eye on them how they worked, a gp who is threatening you if you decline to put you away (that is not even worse with sleep, light, sound, etc) and cbt and get or psychiatry, …can not watch even tv, reading on laptop at bed verry limited, mostly impossible, looking at the cieling or eyes closed with curtains closed and earpluggs in, you name it. If you where at that place, so low, at the bottom, and in my country, you would have no hopes also no more and write (although you could not write anymore but for excample) you would write differently. you would screem it out allthough you did not had the power to scream anymore. Do you understand what i mean? i am glad you are not in this position!!! and live in an other country!!
but many are.
the only advocacy group who was talking with minister of health had to close because they became to ill. Over decades. Minister of health is like you run into a wall. And nothing from US or UK is coming throug to here. now try to eat and sppons are gone. but thank you!
It is indeed the dark ages over there Konjin. I would have hoped for better from Belgium. We can only hope that a rising tide from the long COVID research lifts all boats as I suspect it will. The imbroglio over NICE in the UK seems like a last-ditch effort from the biopsychosocial movement to maintain some influence. They’ve been boxed in the Netherlands.
Unfortunately, the doctors are the last ones to get it it appears.
One Workshop is The BIology of Fatigue from the NIH – which has an excellent lineup and was put together by Vickie Whittemore, and Mass ME has put together one of the most intriguing webinars I can remember. They’re bringing together the NIH-funded research groups and asking them 4 years later – what have we learned?
Both are open to the public and I will have a blog on both 🙂
I’m sure Linda would love to jet over there if she could but the OMF and Solve ME and organizations like that are small organizations with tiny budgets that can only do a fraction of what they’d like to do. We just need to keep supporting them and inch by inch we move forward.
I know the feeling, I too used to get frustrated that long covid steals the spotlight. But if you go on long covid support groups you would see that those people are treated in a very same way as ME/CFS; like it is “all in their head”.
I want to believe that covid for ME/CFS is a blessing in disguise. If they find the cause and the treatment for long covid it will apply for many ME/CFS sufferes, because in all honesty most long covid cases are post viral ME/CFS cases.
Very early they are lining up quite well with the early research suggesting problems with the blood vessels, the ACE-2/Ang II issue – even some findings of hypometabolism in the brain – as well as the autonomic nervous system findings..
We’ll see how it proceeds but so far so good.
Am sad at continued invalidation. This is an Economic War. FYI – What helped me: 1) R/O Pathogens via proper Blood Tests to appropriate LAB (see 12 below for Holtorf Center)… 2) introduce a good pro-biotic, as 80% of our immune function is in ‘the gut’, which runs ‘the brain’, which runs most of all else (our HPA Axis is typically Dysregulated, plus 3) be sure to avoid Cumulatively Disaffective Triggers, which cause other ‘dominoes’ to fall in on themselves) plus it enables proper absorption of nutrition! 4) essential to achieve proper Hydration with balanced Electrolytes! 5) Sleep in a ‘V’ & 6) Perhaps check out “From Fatigued To Fantastic” 4th Ed. by Dr. Jacob Teitelbaum (he consults over FB & also Holtorf Center Docs – see below), … 8) I’ve been on LDN for ~5 years (4.5 mg). Also might try four additional resources: 9) https://www.stuffthatworks.health/myalgic-encephalomyelitis/questions?utm_source=app&utm_campaign=new-question-daily&utm_medium=email&token=gDZb52bp & 10) Wonderful Erica Verillo’s: “Chronic Fatigue Syndrome: A Treatment Guide”, 2nd Edition. Available as an electronic book on Amazon, Barnes & Noble, Kobo, and Payhip (PDF file).
Amazon… only $3.99 for download
https://www.amazon.com/Chronic-Fatigue-Syndrome-Treatment-Guide-ebook/dp/B009B9X36Y & 3) AMMES.org
& 11) “From Fatigued to Fantastic” by Dr. Jacob Teitelbaum 4th Ed…; 12) His protocols are still followed by our wonderful Dr. Karen Bullington right here in GA, USA at the Holtorf Center in Marietta… she’ll get the proper Bloods, sent to the appropriate Labs & created custom Treatment Plan… tell her ‘Hello’ from me! She might do Virtual Consult.
Well Dr. Juudy Mikovitz said the xmrv is the terrible vaccines which caused Chronic fatigue syndrome. I spoke with her personally. Look her up. She worked with Fauci and was fired when she went up against him. Made her life horrible. Check out her books on Amazon. Blame pharm companies in cahoots with global world leaders for purposely trying to kill and mame us. Truth.
She told me never ever ever take another vaccine again, shingles, flu, etc etc and childrens vaccines all horrid!! Plague of corruption Book!!
I hope that long covid will bring something positive for ME patients. It would be nice if they use ME patients as an additional control group in the upcoming studies.
News about COVID vaccines.
”Public health officials are sticking with the recommendation that people get booster shots eight months after getting the COVID-19 vaccine, but that could change based on reviewing the data, Dr. Anthony Fauci said ”
”As the U.S. prepares a COVID-19 vaccine booster shot program, President Joe Biden said on Friday that the administration is considering whether booster shots should be given as early as five months after vaccination. Biden was meeting with the Israeli prime minister and credited his advice that the U.S. should start earlier.”
https://abcnews.go.com/Politics/health-officials-sticking-month-covid-booster-shot-timeline/story?id=79700212
So you have been vaccinated 2 times and now it turns out that this does not protect enough for more than about 5 to 8 months.
in israel, the new corona infections are almost as high as before. While most people there have been vaccinated twice with Pfizer. But 2 times is no longer fully vaccinated as was said before.
Cort, i asked you before: are you taking a third shot? And every 5 till 8 moths a next one. Maybe it is interesting to make a poll so we can see if other fully vaccinated people are willing to do that. That would be very interesting.
i reacted so bad at both ph vacc, am even not on my previous level. gp asked me after 3 months (last vaccine) if i wanted the booster shot (in this country). my head says yes, i would not survive covid. but my boddy screams no! after 3 months of the second vaccin, i would say i have permanent damage. do not know what to do? hoped researchers came up with something else.
Very sad to hear. I hope things get better for you soon. Vaccinating or getting corona is choosing between 2 evils for ME patients. Fortunately, there are also ME patients who had almost no complaints after an infection with corona. Stay strong!
Sorry to hear Konjin. The fact that you’re isolated is certainly in your favor with regard to the coronavirus. Let’s hope the delta variant dies down over the next couple of months. It’s having a devastating impact in some parts of the US but other parts are doing pretty good.
This
is like Mecca for us. It really should be done and I would hope, hope, hope that the NIH suggests that in their guidance. Certainly, the advocacy efforts are working in this direction – including ME/CFS in with the long hauler legislation.
We can definitely do a blog on booster shots. I did fine with the Pfizer shots and actually look forward to getting boosters shots. Hopefully the booster shots will go OK. While I’m still double-masking everywhere I go, I love the feeling that I’m protected.
thank you cort verry much for all your sweet answers and spoons!!!
I started practicing pacing with a wrist band to track my heart rate.
At some point I realized that doctors were my biggest source of crashing.
Between the frustration of dealing with them and the physical effort of getting to and from their clinics. Mostly the frustration. My heart rate starts rising from the day before.
The last one in January, it took me over three months to recover, and that only because finally my vitamin B1 was back in stock.
I vowed not to go to one again for the year of 2021 and see how that goes.
Doctors also tend to reinforce helplessness, despair. Most will rob your hope.
A lot of how you are feeling and are reacting to what happens in your life is 100% the lack of energy production and lack of glucose in your cells. 100% direct effect on hormones and neuroamines. Try to remember that when you feel down.
Have you tried taking the vitamins Bs yet, Konijn?
Move really slowly, start with very very low doses, and each one at a time individually is my advice. Get transdermal or sublingual forms if you can. Metabolics has a nice set in liquid form with no additives. Real real slow and real real low. Just a speck, a few grains of the contents of a capsule, a drop, diluted in water. Watch how your body responds.
Be careful with B6. That can be loopy for some. For B3 niacinamide is the best form.
Get your basic minerals in too. Real real slow. As you get better, you can get them from food sources.
Do you know of Toby’s program in Australia?
He has a lot of free content on youtube. You can just listen you don’t have to watch.
https://youtu.be/K7rhZyFSkwU
Doctors are a waste of time. Most who get better are doing so in spite of them.
P.S. For me, it was very liberating to realize that doctors were not going to help me. Please receive what I wrote with that spirit! ♥*♡∞:｡.｡
(ꈍᴗꈍ)
I can see how that can be liberating. Now it’s up to you….I had never thought of that before.
give you answer as soon as possible. no spoons and total overload but thanks!!!
I wanted to post this little tidbit on how a large segment of Covid long haulers are now developing fibromyalgia–and there are more men in this group as opposed to non-Covid fibromyalgia which favors women.
https://www.medpagetoday.com/rheumatology/fibromyalgia/94299?xid=nl_covidupdate_2021-09-01&eun=g1240599d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=DailyUpdate_090121&utm_term=NL_Gen_Int_Daily_News_Update_active
Me again. My friend just sent me the most superb article from the Atlantic magazine on the state of research for long Covid;
https://www.theatlantic.com/science/archive/2021/09/covid-19-long-haulers-pandemic-future/619941/
It is very sympathetic to those of us with ME/CFS and highlights the failure with some of the current research about long haul Covid. Wonder where that 1 billion dollars in research funding is going? Have a read!
@Konijn,
Finally read through all the comments on this blog. Sorry I completely bypassed all your comments.
I am truly sorry at your state of affairs. If I had a transporter, a la Startrek, I would transport you to California so you could try some of these other treatments. As for hopelessness, when I am in that state, I do remind myself that ‘this too shall pass’–although not sure that is such an effective idea in your case. Just know that others out in the blogosphere are sending you kind and healing intentions.
@Konjin,
I just want to chime in to send you well-wishes and empathy. It’s no wonder that you feel isolated and helpless, in a country where doctors are even less knowledgeable and understanding than they are where I live — in California. Most medical doctors that I have consulted, if trained strictly by an American Medical Association accredited institution, have nothing but pain pills to offer to me. So I go to alternative medicine practitioners for advice. Our health insurance situation here is such that most practitioners who can offer help for fibromyalgia and/or chronic fatigue are not covered by insurance. I spend about half of my monthly income on doctor visits, vitamins, supplements, hormones and medicines that are not covered by insurance. But I try to remember to be grateful that I have access, despite the difficulty of covering the cost. Hearing about your situation reminds me to be glad about the help that I have access to, despite the high cost. If there is something I might do to help you, like ordering supplements that you cannot get, let me know, and I’ll see what I can do.
Adequately powered leronlimab clinical Phase 3 trials for severe and critical COVID are underway in Brazil and are being conducted by Albert Einstein Israelite Hospital (#1 in Latin America), with results expected late this year. Expected to be successful, this life saving therapy should be approved in Brazil, generating revenue for CytoDyn in early 2022.
No mention of the fact that Dr. Patterson proposed a $350M BO of his firm by CytoDyn, and walked away from his engagement with CytoDyn when they rejected it. A key reason, the judge threw their proxy challenge out.
Dr. Recknor is everything Dr. Patterson could have been if he could have controlled hous ego and greed.
Interesting. Thanks for that update!