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
Establishing the connection between ME/CFS and long COVID has been a priority since the pandemic began.
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.
#MEAction’s media outreach has resulted in articles in major media outlets.
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.
Dr. Bateman emphasized that most long haulers were never hospitalized.
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.
Dr. Komaroff reported that 20 million people could have long COVID by the end of 2021.
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.
Avindra Nath
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.
Great Timing
Avindra Nath suggested that the virus may be still be present in some form in the long haulers.
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.
Patients
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.
Great job, #MEAction! Phenomenal that they had all those publications interested! This should help a lot.
It’s been frustrating to see how pervasive the seeming refusal to link long COVID to ME is. And the articles who persist in calling ME/CFS “rare”.
MEAction knocked it out of the park with this presser. Bateman, Komaroff, and Nath came off as knowledgeable authoritative experts. The patient panelists were well-spoken and compelling. Very smoothly moderated as well, with an impressive roster of news outlets attending. Hoping to see more events like this.
Agreed. Very well done and what a media outreach campaign they have!
I almost never can read your blogs aymore, only sometimes the title. what a difference in money for long covid and me/cfs.
if i could, i would cry out not every me/cfs patient is post infectious onset!!!!
mine was cumulative but they even do not in my country search for what infection. because of cumulative, i do not know for shure my desease is post-infectious
it feels also, with many me/cfs researchers that they are “glad” with the long haulers to be able to say, see the post infectious me/cfs patients and try to get some money from there or eve use the donations for me/ cfs also for long covid and others
but many, non post infectious me/cfs patients are against left out, it feels as if now totally
why do me/ cfs researchers not only do me/CFS research? is it not difficult enough? and why do they use the little donation money now strad over other deseases
me/cfs is as heterogenous as hell and so immense complex . it is more then enough
i want pure me/ cfs researchers doing further on their job. i can not hear in my situation long covid anymore and will no longer fund mixed deseases. i am sorry for the long haulers but how much money have they allready?i will only donate pure me/CF research and not only the infectious once. there are subgroups allready, not infectious, please let them do further on whole the me/cfs group and reseArch them
we are so long ill, me more then 3 decades, many of us and we are so neglected
and there are still no homes for people like me, alone, ç!% bedridden, even not able to cope with help anymore, declining every week, if i survive the summer it would be a miracle
I CAN NO MORE AND MANY IN THE é(ù GROUP CAN NO MORE
You are correct Konjin – only post-infectious ME/CFS patients. I understand your concern. I appear to be non-post-infectious as well. (I do hold out the possibility that I had an atypical infectious mononucleosis.
Notice that many of the long haulers had mild infections initially and got worse, much worse over time. It’s not that far of a leap from them to having very mild symptoms – perhaps not identified with a cold – and getting worse over time as well.
Note that people with Gulf War Syndrome, post-cancer fatigue and post-ICU syndrome appear to have identical symptoms to ME/CFS! The upshot for me is that I believe that core problems – produced in different ways are behind all these illnesses.
You can add fibromyalgia to the mix as well – sometimes it’s post-infectious and sometimes it’s not but as with ME/CFS nobody has been able to tell the difference between both sets of patients.
Like Komaroff I’m very optimistic that we are going to learn so much – and not just learn stuff – but learn stuff that’s actionable over the next couple of years. With this amount of money going into research I would be astonished if that was not so.
I agree that ME/CFS researchers need to keep doing pure ME/CFS research. Being able to link ME/CFS to long COVID, though, is a great strategy given the billion plus dollars going into long COVID. Including both patient sets in one study could do wonders.
Please hang in there! It would be a shame to miss the good stuff 🙂
Konijn you deserve better. I wish better for you and hope answers and help come soon. Keep hanging in there.
Hi Konijn,
I agree with Cort and debsw, I feel that in the next while answers may start appearing, for the myriad of issues that people suffer from. But it’s hard to keep going, when your suffering and isolated and every day counts. Please hang in there ?
This is phenomenal! Over the past few weeks, I’ve felt a backlash beginning in some quarters. I’m UK-based, so that probably says a lot and it’s very much of the ‘Wesselly school’: that Long Covid is an invention borne of psychology, inadequacy, deconditioning, blah blah. It’s hugely dispiriting (and of course dangerous), so I’m heartened to read of #MEAction’s incredible work. Thanks to everyone who’s working so hard on this front.
I meant many of the 25% me group can no more and there are dying!
and the nederlands, fine, they finally started, better then here with still get and cbt, but less then 30 million euro’s over a period of 10 YEARS, is a cynicle joke in researchterms and again what a difference with long covid, etc
Yes it is not the hundreds of millions of dollars that we want but this is the Netherlands – the second home, after the UK, of the biopsychosocial movement! The fact that they’ve turned is good news for us. The CBT/GET movement is declining and more money is going to biological research. I imagine that the Netherlands does not have a big medical research budget.
And check this out. The Visser team in the Netherlands has been doing groundbreaking work without extra funding. Their discovery that virtually everyone with ME/CFS has reduced blood flows to the brain just blew my mind. That is a seminal paper that basically rewrites what we know about ME/CFS. That’s from a small but very energetic research group in the Netherlands. It may not take a million dollar study to uncover what’s going on.
I would love, love, love for Visser’s team to get a hold of some of that money! Let’s hope it does.
thanks for article, Cort. Would be great if #ME/CFS could give a list of where they’ve been able to get us into the discussion, and maybe even links to the articles. But even a list would be good enough.
In that regard, Atlantic makes all its coverage of Covid free to the general public; no subscription needed. I wonder if the articles about Covid and ME/CFS fall into that category.
I tried to access the 2019 article and was unable to. Seems one has to have an account. Has anyone else been able to access it?
I’m about to see a new rheumatologist next week, and I don’t know whether to mention I have ME/CFS or not. It usually, STILL, after all these years, means instant dismissal of the importance of anything else I might have to say.
Konjin hang in there. I’ve missed seeing your interesting entries on the blog. Glad you commented on this one.
Atlantic has been a real leader in COVID and long COVID coverage and with getting ME/CFS in the mix. They’ve really done a good job.
I was having some weird symptoms and went in and actually kept my mouth shut about ME/CFS/FM
PS I mean, the 2019 Komaroff article.
FWIW – A professional healthcare worker friend who had C-19 and semi-recovered was given a bunch of blood tests recently approx. 2 months after semi-recovery to screen for CFS like symptoms as she is a “long-hauler” of C-19. That would suggest to me that either the hospitals are getting paid for these additional tests or that someone is looking to build a statistical database of long-haulers with CFS like symptoms.
That is good news! Thanks for passing that on Jorg 🙂
Every time I read this post, I am depressed because so many of us have absolutely no contact with a doctor who takes us seriously or even cares to help. I repeatedly leave my doctor’s office feeling humiliated but not helped. I wish our organization would start organizing real honest to God medical offices in every large city in the nation, so that we can have some help of where to find help!!!!!!! We need to start publicizing the need for medical students to go into the mystery world of these mystery diseases. This much chronic pain is utterly unbearable. And so many of us are left alone, with no resources whatsoever. This needs some legislation, with “teeth” in it and also funds to help those of us with no help from family or retirement funds. If you’ve had the illness for a long time, chances are, you have no money to help you when you need it so badly.
We have a long way to go on the doctor situation. Be sure to check out Solve ME’s Lobby Day. Emily Taylor has spoken of the three legs of the ME/CFS – long COVID situation – research, clinical trials and access to knowledgeable doctors I think they are. I think this years Lobby Day may focus on educating doctors.
https://www.healthrising.org/blog/2021/03/23/lobby-day-chronic-fatigue-syndrome/
Also check out a recent interview with Emily where she talks about her hope that the long COVID situation will lead to treatment centers opening up across the country that support both long COVID and ME/CFS patients.
I wish there was an answer to the financial problems many people face. Health Rising’s “Lives Interrupted” program will help to illuminate those.
https://www.healthrising.org/blog/2021/02/27/long-covid-chronic-fatigue-syndrom-taylor/
Susan Miller, i think you are sooooo right!
I wonder if ME advocacy group could impress upon those who teach doctors to have a day where many cfs /me patients become focus for one day, i an organized compassionate manner?
After nearly 20 years of ME illness I am finally receiving adequate medical care at home, in the US. How is this possible? Simple: all one needs is a fatal cancer diagnosis, Medicare, and sign up with a hospice agency.
What is so great about hospice? Well, they actually believe patients and put huge effort into alleviating symptoms. Stuff regular doctors are supposed to do but can’t be bothered.
I know this sounds like an awful outcome, but maybe this is the best that severe ME patients can hope for. Before cancer I was expecting to experience continued slow deterioration to the point where I would not be able to look after myself. Since I (so far) refuse to consider moving into a human warehouse (nursing home), I would then be looking at ending my own life in a way that would spare others from legal scrutiny.
Now that I have a fatal illness I can consider using the Death With Dignity process available in my state. I’ve suffered enough already. When I reach the point of completely bedbound, I will be more than ready for the last breath.
It’s tragic that it took cancer and unfortunately a fatal illness for you to experience a full fledged medical response.
For those who don’t know jimells has submitted dozens of passionate and thoughtful posts on Health Rising over the years. Many of them descried the inattention and neglect from our federal agencies. They held everyone to account. Even facing what jimells is facing, notice
that his/her focus is still on the lack of support for ME/CFS.
I’m sorry that you’re not going see that turnaround!
Thanks for your passion and particularly thanks for sharing what’s happening now. I wish you the best in your journey!
Hi jimells,
So sorry to read that you have a fatal illness, after being so unwell with severe ME for so many years. I was privileged to spend time working with two people who died from a terminal illness, last year. I was part of a team, and although palliative care had been involved on a less frequent basis, they became more prominent as and when they were needed. Every effort was made to make each person as comfortable and as supported as possible. They both died peacefully, at home in their own beds, which was what they specifically wanted. I hope you find some really kind people to care for you, in a way that you would like.
Tracey ❤
Tracey and Cort,
Thank you for your kind words. Everything I write about ME is all Cort’s fault (ha,ha), because I first learned about PEM and other important ME concepts from his first forum.
And it was here that I read about the American ME and CFS Society and the work they do to directly support patients. If I can keep the vultures away from my estate, there should be something left to help my fellow patients.
?
I have had FM ( post infectious after a complication from my daughter’s birth) for 33 years.
I have had chronic neurological Lyme Disease for 27 years.
All confirmed by labs and doctor’s visits.
I have coped with all of this through various strategies.
But it was a West Nile Virus infection 3 years ago that took me down, and I have never recovered properly from it. It was not diagnosed as so at the time, only later, so no treatment given.
Is there any research or help in the post WNV area ? I rarely see anything.
Thanks.
Your website is a true gem in helping to navigate these complex issues.
I have not kept up with West Nile Virus – I see that some studies are being done. You might want to check out this recent paper on management and treatment – https://pubmed.ncbi.nlm.nih.gov/33717727/ . I hope there’s something in there for you. Keep watching for news of post-viral findings in coronavirus and elsewhere. Hopefully some patterns will emerge
Thank you !
Bev – if you haven’t already, check out Stephen Harrod Buhner’s books. His “Healing Lyme” was a life-saver for me and I was able to get well from a bad case of neurological Lyme Disease. I have several of his books and his “Herbal Antivirals” has West Nile Virus entries in it, so would be worth getting that book as well. For instance, the index references WNV infection progression, mechanisms of infection, medical and natural treatments. He is a master herbalist and genius as far as I’m concerned, I’m sure you would get some help there. Best of luck to you! 🙂
Bev,i agree, Cort’s suggested link great.
this one may be somewhere in citations, but i did lnt see it—it is older, but hopefully the authors have continued their work…
Acute flaccid paralysis: the spectrum of a newly recognized complication of West Nile virus infection
Mustafa Saad 1 , Souad Youssef, David Kirschke, Mohammed Shubair, Dafer Haddadin, James Myers, Jonathan Moorman
from
https://pubmed.ncbi.nlm.nih.gov/16038762/
Thanks Shelley. I will definitely check out Buhner’s books.
Here is the thing. Long Covid has a known cause…a specific corona virus. ME/CFS does not. Until studies focus on what has caused ME/CFS…the illness that started in 1980 in San Francisco and LA and spread around the country in clusters, none of us will ever have effective treatments. Strategies for treating Covid will not necessarily be useful for treating ME/CFS since the origins of these two illnesses may be totally different.
In a way, I was lucky. I was diagnosed with chronic encephalopathy and immune deficiency by two doctors doing research in 1984. I also had severe multiple chemical sensitivity. Because of this, no one ever suggested that it was “all in my head”.
I have been treated by the best and with all kinds of interesting and sometimes experimental treatments at a cost of hundreds of thousands of dollars. As one commenter mentioned, things that worked in the beginning, don’t work now because the symptoms are ever changing.
I have been better than most…able to run a nonprofit mostly remotely; travel and do some limited exercise.
This year has been the worst, however. I can’t seem to get back to my prior status, no matter what I try and new symptoms like chronic nausea have become part of every day.
I simply don’t want to see the precious funds that have been allocated to either long Covid or ME/CFS become part of the “more study is needed” industry.
We need help, now. And the only real answers will come from discovering the causes.
I wanted to end with a happier note.
If you ask surgeons how to solve a problem, they will say operate.
If you ask attorneys, they will say litigate.
If you ask researchers, they will say “more study is needed”.
A even happier note——-sometimes researchers say ‘Eureka!’
and eventually it is heard…… sort of along the lines of the children’s book”Horton Hears a Who”
Where Dr. Seuss writes “”A person’s a person, no matter how small”
And no matter how ill!
In fact the others ridicule Horton, for they cannot hear nor can they see those on the tiny speck of dust from Whoville.
Similarly, so many others can not ‘see’ that millions of people on this planet are ill. But there are more and more who do!
And just like it took one ridiculed hero to save Whoville, it may just be one person who is the hero for all here on Healthrising………….and the voices are growing…… and numbers of researchers are growing……….and, as more have been affected with a “Long- xxx-er Disease,,” there are more and more ‘Hortons’ to hear a Who.
I guess a lot of people don’t believe prayer makes a difference… i believe it does…… and unless someone debunked the study where plants that were prayed for did better, it is an avenue that i believe can add help too.
For that is the ‘Who’ who i believe hears. I dont have the whys or hows that signs of healing which are to follow believers—arnt happening, or the why nots,
but i know it is the ‘Who’ i trust. And i am ever so grateful for each person who is making a tangible difference. I cannot imagine how so many have been felled by cfs and cfs similar disease, but neither can i grasp the hundred and hundreds of people who are joining their voice in helping others through research, advocacy, dissemminatjon of information, fund raising. But i have repeatedly seen one, who with his HR team, has made a difference that is undeniable, and without measure, and without price, and priceless. Kudos Cort for establishing running and managing HealthRising. It is a ‘planet’ where voices are heard and compassion given.
Thanks so much Sunie! That was wonderful. 🙂
I want to second that kudo!! I am amazed by the level of professionalism that goes into this site, and all the more so because Cort is, himself, a patient. I don’t comment often, but I want to record here that I am impressed and grateful.
I’m generally very optimistic about the state of ME/CFS research, Cort being one of the bright spots in the whole community . . . but I’m not excited about this.
The whole thing smacks of trickle-down economics to me. I really don’t understand how this is just magically going to generate enough researchers, clinicians, and community interest to cover all the old and new sick people and all the different subtypes of ME/CFS.
Doctors that I’ve been trying and failing to get an appointment with for years are taking in patients who’ve been sick for less than a year with long Covid.
I understand that ME/CFS researchers pretty much have no choice when it comes to the long Covid bandwagon. They need to be in the thick of things to make sure that money is not wasted on people reinventing the wheel. The ME/CFS community needs to own long Covid.
And yes, long Covid will probably drop some crumbs for everyone, even gradual-onset patients like me.
But the price of that is that now the ME/CFS community has to service millions of new patients whose lives have just been interrupted and who are going to want answers. Patients who are already moving to the front of the line for appointments, testing, research trials, treatments, etc. Patients who haven’t even been sick for long enough to bother calling this disease by its real name instead of “long Covid.”
Is this good for ME/CFS in the long run? No doubt. But I’ll be honest, I’m not seeing much to celebrate from where I’m standing here at the back of a line that just got much, much longer.
You have a really good point Beth. It is like trickle down economics. How is the small ME/CFS research going to take advantage of all this funding and research? That’s a great question.
I do think the emergence of long COVID clinics is going to translate to better care for people with ME/CFS and they will ultimately take on people with ME/CFS. They will also be trying new and hopefully better treatments and come up with new insights into long COVID which apply to ME/CFS.
Solve ME’s Advocacy Day will surely be addressing some of these needs. The Long COVID Alliance certainly is.
Hopefully it will all trickle-down (I hate that term (lol) and the number of researchers and doctors interested in ME/CFS will grow