USA: The Long COVID Alliance (set up by SOLVE)

Solve M.E. Spearheads “Long COVID Alliance” to Accelerate Post-Infectious Research

From a Solve email.

Today, Solve M.E. warmly welcomes 50 new partners in the fight to return millions of Americans to health. The Long COVID Alliance, launched by Solve M.E., is a network of patient-advocates, scientists, disease and public health experts, and drug developers, who have joined together to leverage our collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-infectious illness.

In 2020, Solve M.E. organized 20 organizations who came together to call for urgent government investments for Long COVID research. This successful advocacy effort helped secure $1.15 billion for National Institutes of Health (NIH) research and laid the foundations of the Long COVID Alliance.

Read more about the launch of the Long COVID Alliance here.

To accompany the Long COVID Alliance's launch, the initial partners from 2020 have drafted key recommendations and guidance for the NIH. We also included a list of scientific initiatives from the ME/CFS research community to highlight their importance and priority for NIH decision makers. You can view the complete letter here.

To learn more about the Long COVID Alliance, please visit www.LongCOVIDAlliance.org

 

Solve M.E. Spearheads “Long COVID Alliance” to Accelerate Post-Infectious Research

 

The Long Covid Alliance is on Twitter

 

"Accelerate Post-Infectious Research"
I like the general terminology "post-infectious illness". Better than arguing over what's ME, what's Long Covid, what's CFS, what's PVS, etc. We know so little about any of it or how to tell one from another. Let's have some decent, large longitudinal studies to look into everything that happens post-infection.

 

The only problem with talking about post infectious disease states is it assumes the infection is over and we do not know if that is the case, for instance herpes viruses persist in the body. I suspect a lot of medics do not like the name longcovid as it implies the infection is still going on.

Though it sounds biomedical at first glance so less stigmatizing especially against something like chronic fatigue syndrome when most people feel they are chronically fatigued!

And it could be taken as meaning when the immediate infection is over so there is that. e just have to keep in mind the BPS people are willing to accept there was originally an infection but now it has long gone but deconditioning and our thoughts and fears are all that is keeping us ill.

 

Long Covid Alliance website: https://longcovidalliance.org/

Edit: Just noticed that this link is in the tweet posted above, but here it is for others who may have missed that.

 

I made my comment in the context of some people on all sides aggressively making very definite statements such as Long Covid is or is not ME or that all PVF is or is not ME - when really we have no idea what's what except that we're all ill and it's high time we had a proper and open-minded look at all the different manifestations post-viral illness can take before deciding where to lump and where to split. The only aspects which have been looked at for plenty long enough are the various BPS "explanations", high time those got shelved.

I would view viral persistence as a "post-infectious" problem because it persists long after after it should have been conquered by the immune system. Post-acute-infection-disease is a bit of a mouthful unfortunately though PAID has a certain ring to it

But you're right, the term isn't perfect and those with an agenda are likely to twist it to their requirements.

 

Oh, I like the name Post Infectious Disease States, especially as it sounds nice and biomedical with no moral judgement so it would definitely help our image problem.

As usual, we have to be aware of how it can be used against us. I hate that we have to approach medicine the same way you listen to a shopping channel presenter. Everything they say is true but designed so what you hear is not.

 

I'm wondering if there's any thought of S4ME joining the "Long Covid Alliance"?

So much knowledge to offer.

 

We were invited to do so last week, and after the committee discussed it we accepted, for the reason you give, and also confirmed our support for the letter to the NIH.

We were waiting until the Long Covid Alliance website had been updated to show the forum as a partner before we announced it, but as the subject has come up, we might as well announce it now.

 

That's wonderful. I'm very happy about that!

 

The ME Association has joined the Long Covid Alliance

https://meassociation.org.uk/2021/03/the-me-association-has-joined-the-long-covid-alliance/

 

It’s Been 365 Days Since COVID-19 Changed Me Forever.

I am a COVID-19 Long Hauler and I have been sick for a year. March 15, 2020 was the day I first became symptomatic, with a sore throat as my first symptom. Little did I know that March 14th, 2020 would be my last day of normalcy and life as I knew it. I contracted COVID-19 working as a Firefighter/ Paramedic (FF/PM) in South Florida and contracted it not from a patient, but from someone at the station I sat next to for 10 hours a day at the time, before masks, and before we even knew COVID-19 was anywhere in the U.S besides at that Washington State nursing home. My acute infection was a moderate case that I was able to manage at home, though there were a few days I was very concerned. Thoughts of going to a hospital were driven by my extreme fight to maintain consciousness, which in hindsight, was likely due to the silent hypoxia many COVID-19 patients face. I also experienced a relentless headache, fatigue, weakness, fever, cough, confusion, nausea, vomiting, diarrhea, dizziness, insomnia and shortness of breath after coughing fits or with any activity as simple as adjusting my covers in bed or walking up one flight of stairs. I quarantined for two weeks, and then returned to work where I still struggled cognitively, with fatigue, with shortness of breath, with a cough and the relentless headache. Seven of us at my station had gotten COVID-19 together, and two others besides myself, were struggling with recovery when we all returned.
.....
In November, I connected with Solve ME and the Global Pandemic Coalition and we discussed what we could do for Long Haulers and recognized the overlap with other chronic illnesses such as ME/CFS, Dysautonomia, Mast Cell Activation Syndrome (MCAS), Small Fiber Neuropathy (SFN), Autoimmune Diseases, Fibromyalgia and Ehlers-Danlos Syndrome (EDS). Given this overlap and the large number of Long Haulers that have developed these illnesses (many developing multiple), the Long COVID Alliance (LCA) was formed. The LCA is a network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-viral illness. We helped secure the $1.15B for Long COVID research and clinical trials. We have provided guidance to the NIH about Long COVID research informed by alliance partners, will leverage public and private sector resources to create a post-viral research infrastructure, ensure continued growth, equity and sustainability of research infrastructure beyond the pandemic response and translate research results into diagnostics, treatments and cures for millions. The Long COVID Alliance has quickly grown to include 168 partners since its’ launch on February 25th, 2021.

https://karynbishof.medium.com/its-been-365-days-since-covid-19-changed-me-forever-73b57d86ac0

 

I hope that's not too many to get work done.

 

"The formation of the Long COVID Alliance was announced on Feb. 25. "At this point, we are more of a coalition than an organization. We are composed of both organizations and individuals. We see the need for the Long COVID Alliance as being three-fold: education, research, and advocacy," says Emily Taylor, MA, director of advocacy and community relations at The Solve ME/CFS Initiative in Glendale, California."

https://www.healthleadersmedia.com/...liance-launched-help-coronavirus-long-haulers

 

Long COVID Alliance Webinar: POTS and Dysautonomia in Longhaul COVID: Diagnosis, Treatment and Current Research

Learn about the latest research exploring the relationship between POTS and other forms of dysautonomia in post-acute sequelae of SARS-CoV2 (PASC, also known as Longhaul COVID), how post-viral POTS and other post-viral dysautonomias are diagnosed and treated, and what we can learn from prior research to understand post-COVID POTS.

Apr 7, 2021 03:00 PM in Pacific Time (US and Canada) / 10pm GMT & UTC

https://us02web.zoom.us/webinar/register/WN_zAB61qOcRciUOVslk6l_jQ

 

@Andy

Did you happen to see this article published 22 March 2021? It references Body Politic and Solve ME/CFS... Looks like the Long Covid community will not be immune to claims of pseudoscience and disbelief - despite the NIH funding and Collins's support. Of course this opinion piece comes from a psychiatrist. The article has attracted over 700 comments so far this morning...

Wall Street Journal Opinion Piece: Long article Paywalled:

The Dubious Origins of Long Covid
Echoes of chronic fatigue in the effort to blame the coronavirus for a host of questionable symptoms.

By Jeremy Devine (Dr. Devine is a resident psychiatrist at McMaster University in Hamilton, Ontario.)

Link: https://www.wsj.com/articles/the-dubious-origins-of-long-covid-11616452583

‘Long Covid,” or post-Covid syndrome, is an emerging condition that has attracted great media attention—and now federal funding. The National Institutes of Health last month announced a $1.15 billion initiative to research the “prolonged health consequences” of Covid-19 infection.

The topic deserves serious study. Some patients, particularly older ones with co-morbidities, do experience symptoms that outlast a coronavirus infection. But such symptoms can also be psychologically generated or caused by a physical illness unrelated to the prior infection. Long Covid is largely an invention of vocal patient activist groups. Legitimizing it with generous funding risks worsening the symptoms the NIH is hoping to treat.

The concept of long Covid has a highly unorthodox origin: online surveys produced by Body Politic, which launched in 2018 and describes itself atop its website’s homepage as “a queer feminist wellness collective merging the personal and the political.” In March 2020, the group’s co-founders created the Body Politic Covid-19 Support Group, and as part of their mission of “cultivating patient led research,” the organization coordinated a series of online surveys on persistent symptoms. Based on the results of these, Body Politic produced the first report on long Covid in May.

But many of the survey respondents who attributed their symptoms to the aftermath of a Covid-19 infection likely never had the virus in the first place. Of those who self-identified as having persistent symptoms attributed to Covid and responded to the first survey, not even a quarter had tested positive for the virus. Nearly half (47.8%) never had testing and 27.5% tested negative for Covid-19. Body Politic publicized the results of a larger, second survey in December 2020. Of the 3,762 respondents, a mere 600, or 15.9%, had tested positive for the virus at any time...

This didn’t perturb NIH Director Dr. Francis Collins, who has repeatedly supported the Body Politic Covid-19 Support Group’s patient-led research initiatives, promoting the surveys in a series of official blog posts. In the announcement of the NIH’s decision to commit $1.15 billion to long Covid research, Dr. Collins explicitly referred to the Body Politic research surveys...

Body Politic wasn’t the only patient advocacy group that drove the NIH funding commitment. Solve ME/CFS (which stands for myalgic encephalomyelitis/chronic fatigue syndrome) was founded in 1987 by patients who felt their chronic and numerous medical complaints—including fatigue, “brain fog,” and an inability to exert themselves physically or mentally—were being dismissed by their physicians and neglected by the medical community.

Since its inception, the organization has insisted, contrary to the prevailing view among medical practitioners, that a variety of ever-changing biological disease mechanisms explain their membership’s chronic symptoms and disability. The organization is fundamentally resistant to the idea that chronic fatigue is a symptom of an underlying mental-health issue—which mainstream medicine would assert is often the case. This is obvious from its website, where one “myth” the group claims to debunk is that ME/CFS is caused by depression and anxiety.

In 2017, frustrated by the lack of mainstream recognition of their condition, Solve ME/CFS hired a lobbyist to pressure federal agencies to commit more funds to research. Then, in December 2020, likely sensing an intuitive link with the emerging idea of long Covid syndrome, this same organization spearheaded a letter—also signed by Body Politic—to congressional leaders urging more federal funding be dedicated to investigating long Covid.

The government listened and now will further perpetuate patient denial of mental illness and psychosomatic symptoms. Two days after the NIH’s funding announcement, Solve ME/CFS announced it was launching the Long COVID alliance, which Body Politic shortly joined. Its mission: “to transform the current understanding of Long COVID and related post-infectious illnesses”—including ME/CFS.

A central feature underlying many psychosomatic-symptom disorders is a fixed belief that one is ill and unlikely to recover. By drawing attention to and legitimizing the ever-present threat of long Covid, medical authorities will lead a large group of impressionable patients to believe that their Covid-19 symptoms have not resolved and that they are helpless victims of an unrelenting sickness. In the past century, the media has played a critical role in perpetuating psychogenic illnesses—chronic brucellosis in the 1940s, chronic Epstein Barr virus in the 1980s, and today (although scientifically debunked) chronic Lyme disease. It is therefore alarming to witness the recent proliferation of uncritical and sensational media stories about long Covid.

The NIH’s decision is a victory for pseudoscience and will do more to harm than help patients.

 

Washington Post: Renaming of Long Covid to post-acute sequelae of SARS-CoV-2 infection (PASC) - 22 March 2021

What do you think? I wonder how the Long Covid community and Alliance will have reacted to this one.

Link: https://www.washingtonpost.com/outl...were-given-new-name-condition-why-it-matters/

In a White House briefing last month, Anthony S. Fauci announced the latest addition to the pandemic glossary: “PASC.” This newest term refers to a condition that had widely been called “long covid.” That was a misnomer, Fauci said. What long covid really is, he said, “is post-acute sequelae of SARS-CoV-2 infection,” or PASC for short. And so it has come to be that PASC has replaced long covid to name the chronic, sometimes remitting variant of the covid-19 disease that simply does not seem to go away.


The medical community reacted positively, lauding the benefits of this terminological change as something that radically transformed long covid into a bona fide medical issue. “Naming [PASC] is vital,” said Bradley Sanville, a pulmonologist at the University of California at Davis, “as it gives the condition some amount of veracity that it otherwise wouldn’t have.”

But in fact, replacing the descriptive “long covid” with a medical term represents just the most recent exchange in the often contentious negotiation between patients and the medical establishment. Since the 19th century, debates about naming diseases have raised the question of who has expertise and authority: those who experience diseases or those who treat them...

 

>something that radically transformed long covid into a bona fide medical issue.

I'm sure the long haulers are going to be overjoyed that all of their maladies suddenly became real with this One Weird Trick. We're all well aware of how easily impressed medics are by the power of language, but damn. Unfortunately, simply changing a name does little to fix issues of specificity/definition of the construct. And it's not like going from hysteria -> conversion disorder -> FND changed much about how that one is treated in clinical practice, either.
But hey, at least it's not as blatant of a misnomer as Chronic Fatigue Syndrome is.

 

Yes, this was already shared here, https://www.s4me.info/threads/bps-attempts-at-psychologizing-longcovid.16013/page-29#post-333817 - it looks like it has attracted a level of derision that it deserves.

With regard to the first article, I think attempts by the psychs to lay claim to Long Covid, not least by denigrating the idea that there is a biomedical explanation, was inevitable - it's just how that profession seems to work. But I hope that this will work against them, given that there is already an organised LC patient population who seem on the ball and who, at least in the US, seem willing to learn from the experience of pwME, and that typically anybody with half a brain is able to see how lacking in evidence the BPSers are.

As to the renaming, I haven't really seen any reaction for or against from the LC community. I can see both sides of the argument, the LC community are attached to 'their' name, while the NIH's naming is arguably more accurate. It mirrors, more or less, the arguments around naming of ME.