Emily Taylor of Solve ME/CFS Initiative reported that Congress has approved $1.15 billion (yes that’s a billion with a “B”) for the NIH to fund long-COVID research and clinical trials. $100 million will specifically be used for the rapid acceleration of diagnostics.
Congress has appropriated over 1 billion dollars to study the COVID-19 long haulers over the next three years.
The funding is going to the Office of the Director at the National Institutes of Health (NIH). The NIH has just under 3 years to use the money. I have a feeling they will find a way.
Update! There is some controversy over how much funding will go to the long haulers or how much is devoted to long-term studies of COVID-19. Emily has replied that she’s in close touch with legislators and lobbying groups who report that the funding will be for the COVID-19 long haulers. Time will tell but my take is funding for “long-term studies” of COVID-19 is most likely the same as funding for long COVID. The money needs to be used within less than 3 years – which is actually less time than usual for a large NIH funded study – yet those NIH grants are never referred to as long-term studies. That suggests to me that the money is intended for long term studies of the impact of long COVID.
We’d hoped the tragedy of the long haulers would amount to something, and it has. We’ve always thought that COVID-19 was presenting a once-in-a-lifetime opportunity for ME/CFS. This bill presents the promise of the fulfillment of that opportunity.
Much is unknown. Emily Taylor, who led the charge for the bill, stated that “additional details about the complex weekend budget agreements are slowly emerging from Congress. We’ll have a full ME/CFS budget breakdown for you in the coming weeks.” What we appear to know right now is a ton of money will be spent – much more than has been spent, in total, on ME/CFS in over three decades – for the NIH to study COVID-19 long haulers over the next three years.
Effects on ME/CFS
The effects on ME/CFS could be immense. It should be noted, though, that the long haulers contain a wide variety of patients – from people with lasting heart, or lung, or kidney, or brain damage – to people with ME/CFS and other diseases. This means that researchers of all ilk will surely descend on this new pot of gold. We’ll know more about the bill in the next couple of weeks. Here are some guesses about its effects on ME/CFS.
We should learn a lot about how an infection can turn into a chronic illness like ME/CFS.
ME/CFS researchers and ME/CFS itself will be in the mix. ME/CFS researchers, after all, have done more research into, and have produced a body of knowledge about a common kind of post-infectious illness, that no other disease group can replicate. Plus, we have an established post-infectious disease cohort to use as a control group.
One way or another, funding – whether it’s ME/CFS-specific, or from the use of ME/CFS patients as control groups – should increase, and so should chronic fatigue syndrome’s status both as a research topic and as a disease at doctor’s offices.
Besides specific ME/CFS funding, we will learn a lot how an infection can – even after the pathogen has been vanquished – turn into a chronic illness. Many diseases from ME/CFS, to fibromyalgia, to POTS, to MCAS, to autoimmune diseases and neurological diseases have an interest in this. Avindra Nath, for instance, has speculated that Parkinson’s may be being triggered by the coronavirus. Ian Lipkin was surely thinking about diseases like multiple sclerosis when he said it will take decades to uncover the full effects of the coronavirus. This research could be a boon for so many diseases. After this enormous surge in funding, post-infectious disease research should finally become a thing.
Given the similarity in symptoms between ME/CFS and many of the long haulers, an intense focus on them could tell us much about ME/CFS, including new treatment to try.
Strategic Approach Pays Off
Winning Requires Strategy: Thomas Sheridan, “Helping the Good to do Better: A White Hat Lobbyist’s Winning Strategy From the Front Lines of Social Change”
One thing we do know is that a strategic approach works.
A long-term strategic approach was critical.
While many were surely involved in a bill of this size, according to Thorn Run Partners, a DC lobbying group, the Solve ME/CFS Initiative’s “efforts were instrumental in bringing Congressional attention to the issue”. Thorn Run particularly cited Solve M.E.’s efforts with the Energy and Commerce Committee and the appropriations leadership.
This suggests that four years of dedicated legislative work has paid off. Four years of doing the groundwork to establish relationships and build connections. Four years focused on building allies and enrolling others in our cause. Being there year in and year out.
Congratulations again to Carol Head for hiring the first full time professional advocate for ME/CFS. This is one of the fruits of her decision to take a long-term, strategic approach to advocacy.
Critical Year
It’s been an all COVID-19 year. Emily Taylor and the Solve ME/CFS Initiative spent the last year educating legislators about post COVID-19 and ME/CFS. First, they devoted what turned out to be their biggest advocacy day ever to informing legislators about the connection.
Then, they got over 50 House representatives to sign on to H.R. 7057 – the first ever attempt to get Congress to take a hands-on approach to NIH funding for ME/CFS. The bill titled “Understanding COVID–19 Subsets and ME/CFS Act” provided another opportunity to get legislators on board about the link between COVID-19 and ME/CFS.
“We’ve Got You Now” – Historic Effort to Increase NIH Funding for ME/CFS Begins Amid Signs of Change
Then came the recent letter to Chuck Schumer and Mitch McConnell. The powerful letter stated that if trends hold, “an estimated 3.2 million Americans will be temporarily or permanently disabled by post-COVID-19 symptoms over the next 12 months”, making it imperative to “immediately expand” the NIH and CDC programs to diagnose, study, track, and treat the lasting health impacts of COVID-19 and long COVID.
A multidimensional coalition powered a letter to Congress.
ME/CFS was in the mix throughout. The letter strongly encouraged the new programs to coordinate with researchers, doctors and stakeholders in the ME/CFS, POTS, dysautonomia and mast cell fields. It noted that 27% of those infected in the last SARS epidemic qualified for a diagnosis of ME/CFS four years later.
It asked for $60 million in post-viral research into ME/CFS, dysautonomia, and/or MCAS over the next two years, $110 million to expand and build long COVID Collaborative Research Centers (CRCs) and Centers of Excellence (CoEs), and $3.5 million to educate doctors about long COVID, using lessons learned from ME/CFS, dysautonomia and MCAS.
“Building a strong coalition is intrinsic to success on a large scale”. Thomas Sheridan, “Helping the Good to do Better: A White Hat Lobbyist’s Winning Strategy From the Front Lines of Social Change”
Emily Taylor has talked about how developing strategic relationships with organizations outside the ME/CFS field could come in handy later. That tactic appears to have paid off when numerous organizations with clout – including some with a lot more clout than we have – joined the letter.
Getting the National Health Council on board must have been big. Over a hundred and forty organizations participated in this 100-year old organization committed to “provide(ing) a united voice for the 160 million people living with chronic diseases and disabilities”. Other organizations focused on women’s health were included:
- The National Organization of Women (NOW) – With hundreds of chapters, NOW is the largest feminist organization in the U.S. One of its core commitments is to support women’s health issues.
- The Nurse Practitioners in Women’s Health (NPWH) – NPWH has, for the past 40 years, been fighting to improve women’s health.
- The American Medical Women’s Association has been committed to the advancement of women in medicine and improving women’s health for over 100 years.
- Healthy Women’s mission is “educating women to make informed health choices”.
- Hadassah is a 100-year-old organization that has an “unwavering commitment to women’s health and well-being”.
For the first time (and hopefully not the last time), Dysautonomia International, the Mast Cell Disease Society and the American Dysautonomia Institute joined the effort. So did two post COVID-19 organizations: the Body Politic and the COVID-19 Long Hauler Advocacy Project.
ME/CFS organizations joining the effort included MEAction, the Open Medicine Foundation, the Bateman Horne Center, the Institute for Neuroimmune Medicine, Pandora, Mass ME/CFS and FM, and the Minnesota ME/CFS Alliance.
Others
MEAction and Solve M.E.’s outreach to the media, which resulted in powerful articles in large media outlets on the long haulers, surely helped – as did the now probably hundreds of articles that have been published on the subject. Both groups also quickly reached out and established connections to long-hauler groups. Both produced long-hauler webinars, as well. All these efforts increased our visibility and impact.
Conclusion
The trajectory is clearly up. We’ll learn more about the bill in the upcoming weeks.
COVID-19 presented a huge opportunity for ME/CFS – an opportunity has only thus far been partially fulfilled.
Congressional approval of a ton of money – more money than any of us, I think, expected – for long-COVID research at the NIH potentially changes everything. It should mean large, powerful, comprehensive long-COVID studies are coming. I would expect ME/CFS researchers and patients to be involved in some ways. ME/CFS’s status as a disease both at the research and the clinical level should rise. We should learn much more about how an infection gets turned into a chronic disease. Besides ME/CFS, this research could impact many other diseases.
The Solve ME/CFS Initiative’s outreach work was instrumental in bring the COVID-19 long hauler issue to the legislators. Both they and MEAction also reached out to media and to the long haulers. We’ll know more over the next couple of weeks about the details of the bill, but the potential payoff for ME/CFS is huge.
The BIG Little Drive Update
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It’s fun bringing the news of a $1 billion worth of medical research which could impact ME/CFS, FM, POTS, dysautonomia, etc. (That doesn’t happen every day.) Health Rising has covered and supported the advocacy efforts that contributed to making this mountain of cash that’s coming available. That’s what we do! We’re focused on everything that can impact ME/CFS/FM and related diseases. We’ll be covering what happens with this money in detail. If that kind of reporting floats your boat, please support us!
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Congratulations to Emily — and the other organizations who made this happen!
This is very big news indeed — and very hopeful on a Christmas Eve like no other…
This could be our moment.
I think so… It’s going to be fascinating to see how this all unfurls. We have Avindra Nath right in the heart of post-COVID 19 stuff – advocating for more and more research (and linking it to ME/CFS).
We have Solve’s work over the year to link ME/CFS with the long haulers in Congress. Both ME Action and Solve have been linking ME/CFS to the long haulers in the media. That post-COVID sequelae workshop had a strong ME/CFS presence. You don’t know until you know but I think that besides what we’ll learn about the long haulers, ME/CFS is set up really well here.
This is so much money! I asked my partner who has ME/CFS how much money she thought was involved. She said 1 billion dollars! But I never dreamed it would be this much money…:)
What an amazing news. I am glad I decided to add (although it’s never easy for us ME/CFSers unable to work) Solve ME/CFS Initiative to OMF on 2020’s list of monthly donations. It was a good decision, as I see 🙂
It’s difficult to hope and be optimistic after so so so many years of disappointments and false starts from NIH, but with such a huge amount of funding it’s difficult to imagine how they could possibly NOT learn something new about ME/CFS studying post COVID people, even if they don’t study it directly. And let’s hope they do.
That’s my take! How could they not, even if they ignored ME/CFS, not find something useful for it. There’s some controversy over exactly what the money is being used for. Time will tell on that but this is a huge amount of money and I’ve got to think that there’s money enough for all. We shall see.
***Cort, I just sent you an urgent email related to this.***
Thanks, Julie – I got it.
Brian Vastag on Twitter says Emily Taylor may be misinterpreting the language of the Covid relief bill, which states that $1.15 billion is earmarked for the “long-term studies of Covid-19”, not for studies of long-term Covid. It may be that lots of this money may end up going to virologists to study SARS-Cov-2, not to clinical research on why some people remain ill after an infection. I guess time will tell once more is known about the bill.
Ha! The devil is in the details as they say. I must say it does seem like an awful lot of money for the long haulers! I never dreamed it would be that much. Even if long hauler research just gets a chunks of this, that would suffice I would think.
We’ll have to keep a close eye on this – which is what we would have done anyway.
I must say Emily’s response to Brian Vastag on Twitter gives me great pause to say the least. If Solve ME/CFS makes announcements like these it had better have some hard facts to point to. If it doesn’t it should not make such claims. Effective advocacy deals with the real world – facts and details matter. I’d rather be told the truth than BS that might make me momentarily happy.
I haven’t seen her response but there are a couple of reasons to think she’s right. For one she was apparently in the middle of the process creating this bill and is in touch with the legislators and has been working with a major lobbying firm. In short she’s closest to the action.
Let’s hope!
I think long term studies of COVID refers to epidemiological type studies of viruses triggering other illnesses like MS and cancer down the road. Some of it should go to long covid but I doubt it will be much of a focus. Knowledge of viruses causing later chronic illnesses would signal that resources need to be reallocated in the health system to focus more on viral treatments to save money on treatment of chronic illnesses. There is a potential ROI to this type of study that makes me think the $1.15 billion is more likely to be allocated in this way than to study of long haulers. I hope I’m wrong though.
This is Solve ME/CFS Initiative’s reply to Brian Vastag’s comment on Twitter re the Covid relief bill: ‘Thanks for sharing your thoughts with us. We’ll pass them along to our policy experts and advocacy team.’
11:27 pm · 24 Dec 2020·Twitter Web App
Seems to me to be a fairly level headed response.
Here are links to PDF files documenting the twitter exchanges about this issue. The conversations are no longer available at Twitter because it appears that Brian Vastag has removed his twitter account.
https://drive.google.com/file/d/1Eigj_VjZnOrbEawdZXjyH1cmVaPmO_nb/view?usp=sharing
https://drive.google.com/file/d/16HXtyNtWa2xTLd3hx5gdCqKxpXjZ_dB3/view?usp=sharing
I am posting these here so people can make up their own minds about the conduct of various parties.
Our government runs on laws – it is the text of bills that actually allocates money to different purposes.
The text of the bill that allocates money to COVID-19 relief and other things is located here:
https://rules.house.gov/sites/democrats.rules.house.gov/files/BILLS-116HR133SA-RCP-116-68.pdf?fbclid=IwAR2uG6hx19YJZfKtEGy11BF5nSe12tD5lnyjEwwT-xFEkONBISVwUAmArPA
If you look on page 1831 of this PDF file you will find the exact language allocating funds to the NIH for the study of COVID-19. The wording of the text does NOT mention the term “Long Covid” or anything equivalent to it. The amount 1,150,000,000 only appears once in that document on page 1831.
Thanks Kolya for the bill. The text reads
That of the amount appropriated under this heading in this Act, $1,150,000,000 shall be provided for research and clinical trials related to long-term studies of COVID–19.
Here’s another take. COVID-19 is an acute infectious event. Either you beat the pathogen fairly quickly or you die. In either case it’s very time limited. That suggests there’s no need for long term studies of a COVID-19 infection. The only long term need is for people who have fought off the infection and remain ill. Hopefully that’s what this language is referring to. Nothing else makes sense to me.
The National Conference of State Legislatures post this stating that the NIH money is going to study the long term effects of COVID-19
https://www.ncsl.org/ncsl-in-dc/publications-and-resources/covid-19-economic-relief-bill-stimulus.aspx
It says:
“1.25 billion for National Institutes of Health (NIH) to support research and clinical trials related to the long-term effects of COVID-19, as well as continued support for Rapid Acceleration of Diagnostics for COVID-19.
Thanks Kolya, I read those tweets. Brian Vastag unfortunately, in my view, wrote that Solve M.E. ‘misinterprets’ the Covid-19 Relief bill that passed Congress.
Maybe he could have chosen a less inflammatory way of expressing his concerns?
I don’t want to fight with people who are working very hard – each in their own way – to further the cause of those suffering from the long neglected ME/CFS or more recently the long term effects of Covid-19.
Cort, you say “Here’s another take. COVID-19 is an acute infectious event… The only long term need is for people who have fought off the infection and remain ill.” Does the NIH only allocate funds to study the pathology of diseases? If their remit is much wider, presumably it could also include extended study of the macro effects of the Covid-19 pandemic upon whole populations (including, but not confined to, those who contract it). I desperately want it to focus on Long Covid (and especially its ME-form), but agree we need to exercise caution until the detail is official! Thanks, as ever, for all your work on this.
Finally something to celebrate in 2020! We’ll believe it when we see it unfolding, but this is exciting news and I, for one, am celebrating! Thanks for bring us some good news, Cort. Merry Christmas.
Could something good actually come out of 2020?? I’m so grateful for all of the people who have advocated for the ME/CFS patient population and whose cries for help have fallen on mostly deaf and dismissing ears. Thank you for hanging in there. Thank you for not giving up. For decades. And, thank you, Cort for keeping us informed.
My most fervent Christmas wish is that the NIH won’t waste time reinventing the wheel; will not disregard the progress OUR researchers have made; will build on the existing knowledge funded primarily by those least able to pay for it…US; will not continue to leave us languishing in a purgatory.
I’m weary to the marrowbone of getting my hopes up only to have them dashed (so many damned times in the past 13 years) … while the wheels of research are stuck in the muck and the mire of underfunding. So, I will be cautiously optimistic while still waiting. Waiting to see if they really will SEE us this time…
I really don’t think they will. Avindra Nath’s work and advocacy is crucial here. He’s deeply embedded in the NIH (he’s the leader of the NINDS effort at the big NIH intramural hospital), is doing and ME/CFS and a long hauler study and is right in the thick of things…
Plus ME/CFS was well represented at the Post COVID-19 sequelae workshop. We seem to be in there pretty good!
I wish they had so much money for me/CFS research.there are several causes for it, not only post viral. So how many of us wil not profit of it, and al the diferent subgroups, etc the personalised medicine for me/CFS
i have been over decades so often disapointed , that i even think me/CFs could be for a lot of people a whole other desease(s)
and what Mak C said makes more sense to
Konjin is back! 🙂
Yes, Rpwe said 40% are gradual onset. I wouldn’t be surprised, though, if what applies to one won’t apply to the other. The same pathways may have gotten messed up in both. Certainly the symptoms are very similar. Please hold out the possibility that we will ALL benefit from it. Plus if they do get at the post-infectious cohort that will lead to more interest in figuring out the gradual onset cohort or the toxic onset cohort. We’ll see what happens…..
and i saw the first webinar of results for me/CFs and they even are not willing to make the verry small patient population bigger, they said, others have to do that! so, i think mine of it…just no intrest
Hello Konijn, Hooray! – Good to see you make an appearance 🙂 It’s usually the research that brings you out and you, amongst others, usually have a fairly sharp take on what’s going on. Anyway just wanted to say Hi! and that I often think of you and wonder how you’re getting on… Tracey
Konijn, I’m confused. Which “first webinar” and which “results.” Who are “they” and who would “others” be in respect of which “very small (how small) patient population?”
I guess you are referring to aspects of some research report and if I knew what and where it is then all my confused questions would clear up without you having to answer my multiple questions.
Thank you.
Hopefully this might help all who are suffering ME/CFS. I won’t be holding my breath, even though the funding has been (excuse the language) piss weak for all these years the medical community and researchers still have no definitive reason for ME/CFS. All they seem to no is symptoms we are all familiar with as we live with them daily. Some in the medical community seem to spend more time confusing the issue with the affects rather than concentrating on the cause. One is Andrew Loyd who promoted CBT/GET and over a long period people were not helped, but refused to acknowledge he was wrong. This is why we need fresh eyes and concentrate on the cause more than the symptoms. Could it be that the initial infection or a latent viral infection hasn’t been cleared by the immune system and viral serology is not sensitive enough or reliable. Thus having the immune system in constant activation causing inflammation and depending on where the virus is in the body accounts for people’s differing symptoms.
Good point Dennis. A constant low grade of Inflammation is the cause of this terrible disease. Especially in the nervoussystem.
Agree @Dennis and @gigi,
I have always said Inflammation and Autoimmune dysfunction…..pick your order. Get inflammation down and the immune system detecting and working properly and things should get MUCH better.
But first we have to get the WHYs, because even those may be a compensation response.
Good descriptive term Dennis 🙂
One way to bring new eyes in is to bring more money. Certainly we will get a lot of new and creative eyes on longCOVID. Plus, there’s just the inevitable boost that improving technology bring. Visser, Rowe and Van Campen brought brand new technology to cerebral blood flows and found that virtually everyone with ME/CFS has them. Ron Davis’s Stanford is getting two new machines. Avindra Nath is using a metabolic chamber. We can deeper into the body than we ever have been able. All need is access to the tools. That’s why every day the future is actually a little brighter…Technology is going to bring us through.
Gijs and issie we all agree on chronic inflammation,yet people with CFS have low ESR so obviously the ESR test which doctors rely on is useless. When the immune system is responding to a viral infection the immune system sends out B cell antibodies which makes blood sticky and the red blood cells tend to stick together which probably has an affect on the ESR test. Also would have a major problem in the microcirculation in blood flow to tissue and also removal of oxidative stress from tissue which would be a reason for feeling bad after over exertion. Being diagnosed with Chronic Active EBV by PCR DNA test and previously having EBV serology test showing both negative and positive at different times it shows some tests are not reliable. The inflammation is an immune response to either one or more reactivated viruses. Thanks issie I have had Lomation in herbal mixture. A good read is Anthony Williams book Medical Medium section on Lyme .
@dennis, I hope the Lomatium works for you. I have been on it awhile and I can tell a difference. Just be aware of needing to have liver working well, or that most horrible rash.
I too have too thick blood as you speak of, but we found genetic markers for that.
I have heard of that book before. Someone else told me of it. Thanks for reminder.
Good news, let’s see how many organizations step forward to peck away at the funding. Hope it all stays with those who will use it the best. My daughter hasn’t been contagious with COVID for 6 weeks now, after two weeks of a nightmare of suffering, but I see in her at the moment things that mimic my own struggle with ME. My son in law still has no sense of taste or smell. Thanks for sharing the things you do, Cort.
Wow. Sorry to hear that it’s hit your family, Rivka. I hope they both recover quickly.
With this much money I’m sure there’s going to be a lot of pecking :). On the other hand hopefully it can withstand it. I imagine the next steps – the implementation of it – in particular, who is in charge of that. Here’s hoping that Avindra Nath is in the middle and the Trans NIH Working Group and Vicky Whittemore have something to say….
I’ve become very skeptical, It is clear the NIH and CDC are clearly ignoring effective low-cost repurpose drugs and letting people die. They are punishing doctors who are trying to saves life by treatment early before the complication of covid occurs and cause irreversible damage. They have no real interest to help people and saving lives. So I believe the intention here with this funding is to support the Big Pharma initiatives they will not help long haul covid or ME/CFS. I also believe there is a big risk of vaccine injury with these experimental vaccines.. which will again increase chronic illness. I sincerely hope I am wrong.
Mylaine I to share your concern of this funding with years of NIH and CDC inaction on ME/CFS and the control of Big Phama over Governments in a rapidly expanding Capitalist system. There is a book by Charles Ortleb available in your country which we can’t purchase in Australia called CFS the Cover Up. To me unfortunately for those left with long haulers after surviving Covid shows maybe other latent viruses could have been reactivated during Covid and the immune system struggles to get control of.
I came across this article the other day in The Irish Times: “Scientists say ‘long Covid’ may be linked to more active immune cells in blood.”
‘A European hospital-based study led by Dutch scientists has discovered that patients with more active immune cells in their blood may be predisposed to suffer from so-called long Covid – where chronic symptoms persist long after the usual Covid-19 convalescence period.’
https://www.irishtimes.com/news/world/europe/scientists-say-long-covid-may-be-linked-to-more-active-immune-cells-in-blood-1.4444155
I thought it was interesting.
As for the funding, I think the fight has to continue to get the funding where it is most needed. One of the issues is, I think, that so many people with ME/CFS and/or any of the other associated issues, are generally too wrecked and are focused on surviving as best as they can, and so aren’t always able to be able to pour energy into prolonged and arduous battles.
Having said that there are great organisations that are relentlessly fighting for people with ME/CFS. I feel hopeful but I also believe it’s essential to make people accountable for the way in which this money is spent.
And I think Health Rising is such an important contributing factor in moving the situation forward for all of us because you’ve ‘covered and supported’ advocacy efforts and helped bring people together, which I think, makes all the difference.
I was thinking that my analogy of the life raft (Health Rising) missed mentioning the satellite communication device, powered by solar and wind energy, rigged up by the ‘techie’s’ amongst us!
We’re not just chatting away to each other – Cort and others are linked in to new discoveries around the world.
I was having some sort of meltdown/reconfiguration over the last few weeks! Anyway I decided I’d add my surname – Tracey Anne makes me sound a bit too ‘nice’ and I feel I’m a bit steelier than my first two names convey.
I’m currently a bit tired of being treated like a ‘lesser than’ human. I’m not lazy or particularly ignorant and I’m going to try, in a non-aggressive way to state my point, my experience, (if I feel I need to) and to try to do this without feeling shame. I’m going to try to stay grounded and believe in myself. I don’t want to react in anger – it’s not really me – I’m more into Love.
Hi, Cort, I’m a bit confused by the update. “Update! There is some controversy over how much funding will go to the long haulers or how much is devoted to long term studies of COVID-19.. Emily has replied that she’s in close touch with legislators and lobbying groups who report that the funding will be for long COVID.” By “long COVID,” do you mean COVID long haulers, or do you mean long-term studies of COVID? (All these “longs” are binging around in my brain like billiard balls. 🙂
Ha! Right – not a very revealing update. You might say it obscures more than reveals (lol). It should be the COVID long haulers. I will fix it. Thanks!
Konijn I think whether ME/CFS began progressively or severe viral illness depends entirely on each person’s individual immune response. The BBC in UK recently published an article on Covid intensive care unit patients and studied 2200 patients in 200 intensive care units. Scientists looked at their Genomes compared to the DNA of healthy people for Genetic differences and a number were found. One Gene found was TYK2 ,part of the system that makes your immune cells more angry. Another Gene identified was IFNAR2 linked to anti-viral molecule Interferon. There were more but it shows how each person’s individual immune response could dictate how severe (post viral) or progressive viral infection could determine each person’s beginning of ME/CFS.
Hi Cort, where did you get the statistic 27% of people who had SARS meet the criteria for ME/CFS 4 years later? As I’d like to share that with a few people as a handy wake up stat for people
Cheers
The question I would like to ask is why is NIH not reviewing data suggesting Ivermectin may be of great benefit to Long Haulers. NIH is totally beholden to the interests of big pharma hence its appalling record this year in failing to protect the population. Instead it puts lots of money the way of big pharma for vaccines, Remdesivir etc.
There is no mention of repurposed medicines such as Ivermectin, Vitamins D and C as well as Zinc and melatonin that act prophylactically to protect people from infection.
This is wonderful. Curious, how we can help from here? What happens? Can we continue to advocate on the types of trials that take place and/or ensuring they include CFS too?
Corinne ( and everyone), I’d like to suggest that participating in Solve ME’s 2021 Advocacy Day in April will be a great way to get involved. Check out their website http://www.solvecfs.org for info on past events. I believe they’ll be announcing details for this year’s event soon. I participated last year from my bed; I spent several hours on the phone advocating with congressional staffers. It was a wonderful experience that has stayed with me all year long.
Thanks for the great blog on this! This is truly wonderful and a little hard even to wrap my mind around. So is the 1.15 billion with a B signed into law or what’s the status of it? Is there a list anywhere of which members of Congress supported it?
I don’t know who supported it but except for Mr. Trump who was able to delay it for a week or so I think it was overwhelmingly approved.
It is hard for me to wrap my mind around that number as well. It’s still hard to do that. 🙂