We’re moving into a prime advocacy period. This is the second of a series of blogs on advocacy that are going to appear over the next month. The first focused on the big advocacy event of the year – the Solve ME/CFS Initiative’s Lobby Day. If you’re in the U.S. and are going to participate in one advocacy effort this year, make it that one. Registration for Lobby Day is still open!
#MEAction’s Massive Media Outreach
Health Rising has been mostly focused on legislative actions, but there are many sides to advocacy. Good media coverage, for instance, can make a real difference when legislators, in particular, are involved.
It’s been critical from day one that we cement the connection between long COVID and ME/CFS with legislators, the press, the research community and the public. The Solve ME/CFS Initiative successfully focused on doing just that on the Hill last year. #MEAction has done the same in their efforts to get the word out to the press and to clinicians.
I asked Adriane Tillman, #MEAction Editor, about #MEAction’s media outreach effort. It turned out to be massive.
She explained that as soon as the pandemic began, #MEAction began focusing on making sure that it was understood that COVID-19 was going to result in a surge of post-viral illnesses, that long haulers were experiencing symptoms similar to those in ME/CFS, that ME/CFS needs to be studied alongside the long haulers, and that long haulers with ME/CFS-like symptoms should not engage in graded exercise therapy (GET).
The long-hauler phenomenon began to emerge quickly as the virus spread in the U.S. and elsewhere. #MEAction sent out its first press release about ME/CFS and the long haulers in May. I’d been following media reports on long hauling to see if the media was picking up on the connection between long COVID and ME/CFS. The news was not particularly good. While some good articles were out there, most seemed to be ignoring it.
That changed, though, when an #MEAction advocate got Anthony Fauci to make his first public statement connecting ME/CFS to the long haulers. After the press gobbled that up, ME/CFS started showing up more in the news.
#MEAction ramped up its media game in October. Adrienne explained that #MEAction tracks every single journalist writing about long COVID in the US and UK (and some in Australia, Canada and South Africa.) They’ve sent every journalist who’s reported on long COVID an information sheet that emphasizes the connection between it and ME/CFS, and the possibility that millions of long-COVID sufferers could appear. They also linked the two conditions together when they sent out a press release “Meet the long haulers,” which focused on three long haulers with ME/CFS-like symptoms.
To date, they’ve sent emails to 900 journalists. They’re currently emailing about 5-6 journalists a day.
Adrienne reported #MEAction’s outreach has directly resulted in journalists writing stories about long COVID that included ME/CFS in The Atlantic, Time, The Guardian, Daily Mail, Scottish Sunday Express, Washington Post, New York Times, Kaiser Health News, US News & World Report, Medscape, Vox, Scary Mommy and Bustle.
Plus, they believe that other outlets, such as NYT Magazine, that have written about the ME/CFS / long-COVID connection, may have been influenced by their outreach campaign.
Worried about the emphasis on graded exercise therapy which had begun popping up, they also began emailing an information sheet to every single clinician who’d been quoted in the articles about long COVID. Among other things, the clinicians’ letter cited authorities such as the CDC, surveys which demonstrate the harms GET can produce, provided the ME/CFS Clinicians Coalition stand on GET, and gave the clinicians a link to a continuing medical education course (ME/CFS) on ME/CFS.
Thus far, they’ve contacted over 100 clinicians working at long COVID clinics. Twenty have responded favorably to their emails, including clinicians from the Mayo Clinic’s long COVID clinic and at UCLA.
#MEAction’s Press Telebriefing About the Intersection Between long COVID and ME/CFS.
#MEAction’s latest major media outreach effort was the March 25th Press Telebriefing. Thirty-eight journalists attended the telebriefing, and some who could not make it requested a recording.
Journalists from some major media outlets including The New York Times, Fox News, NBC, CNN, Chicago Tribune, Nature, Scientific American, US News & World Report, Medscape, Future Medicine, Women’s Health UK, Mercury News, Fast Company, Luzerner Zeitung in Switzerland, Carte Blanche South Africa (and Health Rising :)) attended the briefing.
Laurie Jones started off the meeting with a crucial fact that hopefully stuck in the journalists’ minds: 80% of ME/CFS patients develop the disease after an infection. Jamie Seltzer moderated the discussion.
Dr. Lucinda Bateman MD – the Bateman Horne Institute
Who better to talk about the intersection between ME/CFS and long COVID than one of our best communicators – Dr. Lucinda Bateman.
Speaking in front of a colorful bookcase, Dr. Bateman highlighted the role post-exertional malaise (PEM) plays in ME/CFS and then went on to talk about the sleep, fatigue, pain, orthostatic intolerance pain, headaches, allergies, sensitivities and other symptoms that occur. Diagnosis, she said, often takes months or years.
She then emphasized a most important fact – that most people with long COVID were never hospitalized – and they display the same general symptoms (fatigue, PEM, cognitive symptoms, tachycardia and dizziness, headaches) found in ME/CFS.
Of the first 12 long haulers the Bateman Horne Center has seen, 10 met the criteria for ME/CFS. Most have been sick for almost 12 months. Two were severely impaired, while the rest were “moderate”; i.e. they could handle about 2-4 hours of upright activity…(Only in ME/CFS world could that constitute being “moderately” impaired).
Three quarters met the criteria for POTS and a substantial number (I missed the number) met the criteria for FM. They suspect small fiber neuropathy (SFN) is present in about half the patients and mast cell activation syndrome (MCAS) is present in many.
Anthony Komaroff MD
Tony Komaroff has been studying and speaking out on chronic fatigue syndrome (ME/CFS) for three decades. His article on ME/CFS, “Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome”, in the Journal of the American Medical Association (JAMA) was one of the journal’s most read articles of 2019.
Sitting in front of another, albeit less colorful, bookcase, Tony Komaroff presented evidence that a post-COVID illness was entirely predictable. Similar fatigue syndromes following infections, he said, have been documented for 100 years.
While some differences between ME/CFS and long COVID are present (long COVID patients are more often breathless, and have taste and smell problems), most of the symptoms are similar. He, too, noted the odd fact that, as in ME/CFS, most long-COVID patients had what seemed like a normal infection at the time; i.e. they were never ill enough to warrant hospitalization; they just never recovered.
Next, Komaroff presented a staggering figure. If, as expected by the end of 2021, 200 million people have been infected with coronavirus, some 20 million people could have long COVID.
Komaroff next ticked off multiple findings in ME/CFS: problems with autonomic nervous system control, immune activation and exhaustion, abnormalities of energy metabolism, a state of chronic oxidative stress, gut problems. (Each of them highlighted how important it that ME/CFS researchers get involved in long-COVID studies.) Komaroff believes long COVID will be caused by abnormalities in the brain but was “optimistic that we are on the threshold of learning about more about both diseases”.
Komaroff made a little boo-boo, which would probably only matter to ME/CFS advocates, when he stated that the NIH had substantially increased its funding for long COVID and was dedicating $1.1 billion to studying it. Actually, the NIH never included long COVID in its strategic plans for battling COVID-19, nor did it dedicate specific funding to it. It was only after Congress gave the NIH $1.15 billion in December for long COVID that the NIH became engaged.
Still, it’s a ton of money and Komaroff reported the huge investment “by the NIH” was already attracting many talented researchers. He believes the next five years will bring us some fundamental answers about both ME/CFS and long COVID, as well as good diagnostic tests and some treatments. My takeaway was – just hang in there – good things are happening.
Other countries, Komaroff said, are following suit with the UK, Canada, and recently the Netherlands upping their spending on long COVID.
Speaking in front of a plain blank wall, Nath went over the basics of the NIH’s Intramural Study on ME/CFS: how it’s taking place in the NIH’s own hospital and research labs, how it’s screened hundreds and hundreds of patients, how a panel of ME/CFS experts was used to ensure that it got the right patients.
The Intramural Study (background – not from Nath’s presentation)
The NIH’s Intramural Study for ME/CFS study began screening participants in 2016. People with documented, infectious triggers who had been sick from 6 months to 5 years were included. Sixty-two individuals from fourteen different institutes in the NIH have collaborated in the study thus far.
Two phases of the study exist. The first phase required a hospital stay of 5-10 days and included spinal taps; MRIs; blood, saliva and urine collections; autonomic nervous system testing; and a sleep test. The second, more intensive 10-day phase included two exercise stress tests; a stay in a metabolic chamber; MRI; EEG; another spinal tap, and more blood, urine and saliva samples.
A January 2020 update reported that 27 ME/CFS patients and 24 healthy volunteers had participated in the study. Of the 27 ME/CFS patients, 19 have been adjudicated (passed through) for the second phase of the study. There’s no telling how many made it to the 2nd phase of the study before the pandemic hit.
The pandemic, of course, stopped the study in its tracks. Still, Nath reported that a massive amount of data had been gathered, and was currently being analyzed by four different task forces. Nath didn’t provide any insights regarding the study findings, but we expect papers to start showing up in the late summer or early fall.
Nath has turned out to be a seemingly perfect pick for this job. He’s a post-infectious disease specialist who’s worked on every single pandemic and listed some of them off (HIV/AIDS, Zika, Ebola, Nodding, Dengue). His work on the post-infectious ME/CFS patients set him up nicely to take a leadership role in long COVID (or Post-Acute Sequelae SARS-CoV-2 infection (PASC).)
He’s beginning a long-COVID study which closely mimics the ME/CFS intramural study that’s been underway for four or five years. He called it a massive effort, and said that he’s personally talked to 200 patients. His goal is to screen 1,000. After the telephone interviews are completed, he will start bringing them in.
He also autopsied the brain tissues of a unique cohort of individuals with COVID-19 who did not have a serious illness (respiratory problems or organ failures), but suddenly died, and is engaged in a study of long-COVID patients with neurological problems.
Later, in response to a question regarding the positive effects vaccines are having with some long-COVID patients, Nath stated that he believed that viral fragments may be contributing to long COVID, and highlighted other diseases in which this appears to be occurring. He noted that the brain can be loaded with non-replicating viruses which are transmitted from one cell to the other. If that was happening, you wouldn’t find evidence of the virus in the serum.
Later, Komaroff mentioned a recent Nature study which found viral remnants in the gut which were eliciting an immune response. Interestingly, this type of scenario has been proposed before in ME/CFS. A blog is coming up.
Two people, one with long COVID and one with ME/CFS triggered by a different infection, spoke. #MEAction chose the participants well. Both were nurses, both were in superb physical shape prior to getting ill, and both were eloquent.
Both had been given instructions to push through. After trying a yoga class, one experienced a relapse from which she has never recovered, and has experienced multiple hospitalizations. She ascribed her experience with an infectious disease specialist, who after a five minute appointment wrote that she had psychological issues, to structural racism and noted how difficult it was for black people to get diagnosed. Fifty percent of medical school residents, she reported, have false biological ideas about the differences between blacks and whites.
Update! The event has already triggered one major media article!
The ME/CFS long COVID connection is getting around! Check out two articles which just appeared.
- A superb interview with Lenny Jason regarding long COVID and ME/CFS
- Charles Shepherd talks with Pharmaceutical Technology – Long Covid: could chronic fatigue syndrome be taken seriously at last? (pharmaceutical-technology.com)
Adrianne said #MEAction would continue to expand their long COVID / ME/CFS outreach to the media and to clinicians.
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.