How long will people with long COVID have to wait for help, the PSA asks.
How long, indeed? Some people with long COVID are now entering their third miserable year with the illness. They can’t be happy. Their doctors are at a loss. Treatment trials are underway, but most are too small or poorly run to light up the medical world. The huge NIH Recover Initiative has, thus, far provided nothing – not even an interesting study, thus far.
Bills to provide more research and access to treatments in the U.S. have been blocked by political infighting, the many other issues facing Congress, and by Republicans who want to see a diagnostic test first – highlighting the fact that, over two years later, we still don’t have the research criteria needed to inform research studies and, in particular, clinical trials.
Still a Thing
For all the turmoil, the slow going, and the typically muddled response of the medical profession, though, one fundamentally important thing for long COVID has happened: it’s still a thing.
Long COVID hasn’t disappeared or faded into the woodwork as many of us from the ME/CFS world feared it might.
Long-COVID articles continue to regularly appear in major media outlets. Editorials attesting to the seriousness of the condition and bemoaning the lack of progress continue to show up in important medical journals. Patients are still whacking the NIH Recover Initiative for its anemic response.
In short, while everyone who has long COVID or its sister disease, ME/CFS, has had to confront everything from ill-informed doctors, poor treatment options, financial worries, career disruptions, the loss of social contacts, massive stress, and worry – as well as the misery of poor health – long COVID has had legs – and that’s no small thing given that two years have passed since it appeared. That’s more than time enough for the medical world to move on. It hasn’t happened, though.
National TV and Radio Ad Begins
In fact, the word is continuing to spread. The latest manifestation of that comes from the Entertainment Industry Foundation (EIF) – an 80-year-old organization created by some of the biggest names from Hollywood’s golden years (Samuel Goldwyn, Humphrey Bogart, James Cagney, the Warner brothers). Since then, EIF has supported everything from the American Red Cross to polio campaigns, to disaster relief, and recently, to children in Ukraine and the Stand Up for Cancer campaign.
Now it’s turning its attention to long COVID. Solve M.E. approached the EIF to create a national TV and radio public service announcement (PSA) for long COVID, which will be backed by more than $20 million in donated air time to get the message across. Learn more about the PSA here. Emily Taylor of Solve ME reported that the “How long” ad has already been picked up by several media outlets and will be distributed widely for most of the rest of the year.
Nancy Klimas has found that some people with long COVID don’t know they have it.
One reason PSAs like this are vitally needed is that many people with long COVID don’t even know they have it.
Witness Nancy Klimas’s experience. With hundreds of thousands of people with long COVID living in the southern Florida area, ME/CFS researcher Nancy Klimas was sure that recruitment into her big long-COVID study would be a snap.
It wasn’t. In fact, as she related at the recent IACFS/ME International Conference, it’s been “incredibly challenging”. One of the reasons is that a lot of people don’t know they have long COVID.
That may seem strange but consider how long COVID often shows up. You come down with an infection – and beat it (sometimes without even knowing you’ve had it) – and then, sometimes weeks or months later, you become exhausted, can’t sleep (or all you do is sleep), your heart pounds when you stand, you can’t think well, and the tiniest bit of exertion – maybe just a walk down the block – exhausts you.
Hence the value of a PSA that dramatically and succinctly points out the major symptoms of long COVID. Please share it widely – it will benefit us all.
Solve M.E. – the Solve ME/CFS and Long COVID Organization
Note the second line “Solving post-infection diseases”
It says something about Solve M.E. and its versatility that it was able to partner with the EIF to produce their PSA for long COVID.
For those who don’t know, The Solve ME/CFS Initiative (formerly known as the CFIDS Association of America (CAA)) has been fighting for people with ME/CFS for at least 30 years. Sensing the immense opportunity long COVID presented for people with ME/CFS and other post-infectious diseases, Solve M.E. shifted tactics, created the Solve Long COVID Initiative, and poured resources into securing funding for long COVID. That culminated in a congressional allocation of over a billion dollars to the NIH for long-COVID research.
The decision to focus on long COVID early was a gutsy one since we didn’t know at the time how close long COVID was going to be to ME/CFS. With studies showing similarities in symptoms, exercise findings, the HPA axis, EBV reactivation, small nerve fiber problems, blood vessel issues, and more – it’s clear the gamble paid off: the two diseases almost couldn’t be closer.
It bears remembering that long-COVID research is getting about 30x more funding than ME/CFS in the U.S. Dozens of long-COVID clinics have been, or are being, set up. Dozens of small treatment trials have already been published. In short – the road to the end of ME/CFS in large part lies through what we learn about long COVID. The more help it gets the better off we all are.
While this ad focuses entirely on long COVID, it leads to a website with information on both long COVID and ME/CFS, and future “How Long” ads will include ME/CFS and other post-infectious diseases. Solve M.E. stated:
“We want “How Long?” to become a battle cry that focuses attention on the urgent need for research into all of these little understood and under-funded illnesses.”
Help keep long COVID “a thing” for people with long COVID, people with ME/CFS and people with all post-infectious and similar diseases. Please watch and post the video to your social media sites and send it to your family, friends, and colleagues.
I’VE HAD ME/CFS FOR 35 YEARS – STARTED WHEN I WAS 51 AND NOW I’M OLD…….HOW LONG? I’VE TRIED REMEDIES AND SPENT THOUSANDS OF DOLLARS LOOKING FOR HELP. NOTHING HAS WORKED AND NOW I’M MOSTLY BED BOUND.
I SEARCH NO LONGER FOR A CURE. 35 YEARS OF EXISTING NOT LIVING. MAYBE LONG HAULERS WILL MAKE ENOUGH NOISE TO AWAKEN RESEARCHERS TO FIND A CURE FOR THEMSELVES.
THANK YOU CORT FOR NEVER GIVING UP – WE APPRECIATE YOU.
I completely agree. 20 years I’ve been suffering. Hopefully long haulers will have better luck, better treatment, more compassion then I haven’t ever got.
Thanks, Diane – I started off younger but have had ME/CFS for about the same time. Let’s hope something turns up soon.
I’ve had this for over 30 years. Pardon me if I don’t feel sorry for someone who’s had it for 3 years. I hope this leads to a cure, but I don’t have much hope.
Thanks, Cort, for keeping us informed
You would think someone that has suffered that much would have a bit more empathy!
Well I only have it for 2 years now, mecfs, but cannot leave the bed, cannot speak, cannot tolerate people, light or noise, have to be nursed by my parents to barely survive ..
If you “lived“ (it‘s not living) like this for 30 years you got all my respect
Jo, do you not see the your statement as being an oxymoron?😉
My now 7 year old son and I have long Covid that has turned into ME from march 2020. I know the MECFS community has suffered for decades. I know there are some kids with MECFS bedridden for decades well into adulthood. There’s a possibility that my son will continue to decline as well.
I am only now able to walk, talk and have some sort of normalcy thanks to PwME such as Rivka Solomon and Wilhelmina Jenkins who reached out to help me recover.
I know you are jaded from decades of neglect by media, government , doctors and research. But this isn’t an either or. Most of us that are the sickest from long Covid have MECFS. Making us now part of the MECFS community.
Would YOU leave behind someone in your own community? Of course not.
Because of the huge overlap, the more we raise awareness of long Covid the more urgency everyone will have to find therapies and diagnostics for MECFS.
I urge every long Covid researcher, journalist and organization that reaches out to me, to reach out to pre covid mecfs patients as well. To hear your stories, value your wisdom and treat you all with proper respect. Other long covid patients turned advocates do the same.
You can rest assuredly that there’s a lot of fight in us newly minted PwME. Even if it’s from the other side of the computer. ✊🏾
So well, said Cynthia!
I particularly loved this part:
Thanks!
90% chance ampligen from aim immunotech gets you out of your bed!
But it’s held back by our leaders for almost 30 years now.
I could have written your history as well, Diane. 37 years after the original Epstein Barr infection in 1969 when I was 15. Bedbound as well, 17 major surgeries and needing 3 more. I understand they are not having to wait for Disability etc…the things that destroyed so many of us and our families. For the last 20 years I have been more afraid of living than i certainly am of dying… But God knows the details and that is good enough for me. What choice do I have? We didn’t get to make a choice. We just dealt with the hand we were given. Thanks for all you do, Cort. You have earned your crown in heaven for what you have done here!
I applaud your efforts as well Cort and hope this is received well gaining attention to get long covid, ME/CFS solved. Remember those of us vaccine injured who are suffering in silence as well please. I agree, God knows the details and goes before all of us!
I think this is just going to be SO effective (for *both* long COVID and ME)! The message is clear.
Well done, Solve M.E., and a huge thank you to EIF – this is exactly what is needed. I feel a lot of gratitude. It’s my hope that each of us shares this far and wide.
I truly hope to see this on network television, internationally. What can we, individually, do to expand this campaign’s reach? It’s been my experience that most people have never heard of “long Covid” – so this will go a long way to rectifying that.
You know I notice “long COVID” all the time but I’m looking out for it. A lot of people apparently haven’t – witness the low recruitment rates for the RECOVER Initiative and Dr. Klimas’s study.
So this PSA does multiple things – it informs people they may have long COVID, directs them to resources, buffs up long COVID research, makes long COVID real to families and friends, and will undoubtedly produce some advocates for it. That, in turn, helps ME/CFS because the more attention to long COVID, the more funding for it, the more research that gets done – the better off we will all be.
We “live” in hope. In my direct family, 3 generations have ME. My Dad, me and my daughter. When my Dad first got it, he tried to push through and I believe this did a lot more damage in the long run. I have had it for at least 30 years that I know of and my daughter for around 5. She is 20.
There are members of more distant relatives, who have similar autoimmune issues. I certainly believe there is a genetic component. I would love to be part of an in depth study. Maybe people will begin to understand that what we have is real.
Sure sounds like a genetic connection. ME/CFS has had so few genetic studies done – really a shame – but we do have a nice big genetic study underway at DecodeME and Dr. Bateman hinted at one that might get underway in her neck of the woods.
Plus we’re going to get some huge genetic studies done with Long COVD for sure. If markers pop up there it will be much easier to search for them in ME/CFS.
i have had cfs for 12 years, it began with a viral illness/ mono. i also have fibro and polyneuropathy. a good day is when i can get some housework done . the only thing that makes my life livable is my dogs and cats.
Ampligen from aim immunotech can help all of you but for some reasons unknown to common sense higher forcer are preventing ampligen from comming to the market.
I don’t know if Ampligen is going to help everybody but it sure would be nice to have it available. Let’s hope long COVID gives it a lift.
I’ve had ME/CFS for 35 years. FIBROMYALGIA became a problem a few years later. I’ve also tested positive for LYME. I also have spent thousands of dollars trying everything and not succeeded. My husband says why, why are you always looking for a silver bullet, I replied BECAUSE NO ONE ELSE CAN HELP ME, I HAVE TO TRY! Now I am also old and missed doing all the things we planned to do in retirement. My husband wants to sell the caravan as “all you do is sleep or sit under the awning”. I’m fighting to keep this one thing to just “get away” though he is fighting post cancer exhaustion so understand his point of view. I’m so pleased long covid is getting something happening at last, though too late for me.
I hope you can keep that caravan and get out on the road, Hellene! It will take some time to get to really rigorous and big treatment trials but the fact that so many things have been looked at already is really encouraging.
My story exactly!
Hellene, Hang in there. I’ve been looking for the Silver bullet since 1956. Things are looking brighter. At 87 yrs. I remain hopeful.
Millions of people worldwide living with ME/CFS, many for decades, also often ask “How long” will their chronic illness last. “…long-COVID research is getting at least 30x more funding than ME/CFS in the U.S.” If our health authorities had properly funded ME/CFS in the first place, the search for Long COVID answers may have been more easily and quickly found. Thank-you Solve M.E. for approaching EIF and for EIF running this media campaign.
Agreed – people with long COVID should know that one of the reasons they are in the fix they are in is that the NIH has refused to provide funding for ME/CFS – the largest post-infectious disease to date. They had plenty of opportunities – and actually funded almost no long COVID research until Congress gave them a bundle of cash: lesson – never trust that the NIH will support long COVID.
i’m not sure how to do the math. if long covid has a billion dollars funding, do you divide the 30% figure into the billion to arrive at the amount of funding cfs/me is currently receiving this year?
The NIH was given $1.15 billion over four years I think it was – or about $300 million a year. I think we’re getting about $13-15 million a year. That doesn’t count the many more non-NIH funded long COVID studies that are going on – so somewhere about 30x’s I would guess.
Thanks Cort. I hope this helps
ALL of us.
When you have long covid? After 3, 4 or 6 months? You can be better within 2 or 3 years, you see that with ME/CFS too. Long covid patients after 2 or 3 years are rare because corona only exist 2,5 year now. I know someone who have had corona in the beginning and was still tired till a year later. Now she is completely better.
This may be an unpopular viewpoint. I think it is great that long COVID is being promoted – I think the same for many other diseases. I personally am not going to promote the campaign because I am focusing on raising ME/CFS awareness. I hope ME/CFS does get benefits from long COVID being promoted but it doesn’t seem like they are going out of their way to connect the two and that we would get the same passive benefits regardless (as other diseases like fibromyalgia and Ehlers Danlos whose advocacy organizations actually focus on their own diseases are doing). At this point, SolveME is no longer really advocating for ME – some of our researchers and doctors have moved fully to long COVID (and we already had impossibly few – long COVID has many resources). I actually think it is egregious to ask ill patients to advocate for another (possibly related) disease without any concrete efforts going to ME/CFS. I spent weeks advocating for the long COVID legislations which didn’t even wind up mentioning ME/CFS in the final cut. So far, most of the efforts have not mentioned ME/CFS, except as an aside concerning educational materials – and 12 other disease who didn’t focus their advocacy on long COVID were mentioned too. I sincerely hope long COVID gets treatments and that it helps ME/CFS patients too, but after 38+ years of dealing with ME/CFS and watching my kids suffer for 6 1/2 years, I want a ME/CFS PSA too – we are not even getting real crumbs – just hoping a connection is made. We need to advocate DIRECTLY for ME/CFS too – this is not a zero sum game. SolveME could be advocating for long COVID AND ME/CFS – instead they chose to put all their efforts toward long COVID (removing all mention of ME/CFS from their ME/CFS advocacy week talking points) – that is not gutsy – that is disheartening.
After having ME/CFS for over 40 years and wanting progress more than anything- I would do just what Solve ME is doing. We know how far advocating solely for ME/CFS has taken us – not very far. Even after the emergence of long COVID the NIH wouldn’t give us a dime more. I think you’ll be happy at the way things work out.
Cort – yeah our disease is underfunded and marginalized so lets just advertise a better disease and not mention ME/CFS in any of the legislation (other than in the educational awareness section along with a bunch of other diseases that didn’t give up their advocacy) or PSAs? Keeping ME/CFS advocacy going in parallel wouldn’t impact long COVID advocacy. Making an ME/CFS PSA might actually make a difference. SolveME’s shutting down all ME/CFS advocacy efforts in favor of helping long COVID is not gutsy or flexible – it is gaslighting. They could have done both – kept ME/CFS in the talking points – mentioned ME/CFS in the huge bills, put some effort into both. Instead they (and you) are asking sick advocates with minimal energy to support an advocacy group that doesn’t even see ME/CFS patients any more. I don’t think we will get anything more out of long COVID after having given up all advocacy than we would have if we had continued to advocate for ME/CFS patients WHILE helping long COVID patients. We didn’t have to be erased.
I have visual processing issues and terrible light issues but I watched the PSA. The PSA doesn’t mention ME/CFS anywhere – which is fine but what about a ME/CFS PSA too that ME/CFS patients can support. On the SolveCFS Youtube channel – “SolveME
7.02K subscribers
https://solvecfs.org/solve-long-covid/
The Solve Long Covid Initiative, (part of Solve ME/CFS Initiative, a 501(c)(3) organization) in conjunction with the Entertainment Industry Foundation (a 501(c)(3) organization) has launched a new public service (PSA) campaign to educate Americans about the symptoms of Long Covid, create empathy for sufferers, and emphasize the urgent need for research into this complex disorder.
Visit https://solvecfs.org/solve-long-covid/
to learn more and get involved.” ME/CFS is only mentioned as part of the organization name. I don’t object to long COVID getting a PSA – I object to solveME not directly advocating for ME/CFS any more. I have funded solveME for years. We need an advocacy organization that sees ME/CFS patients as more than people they can get to promote long COVID advocacy.
We have a difference in strategy. I think this is a golden opportunity that we would be crazy not to take advantage of. It’s not about gaslighting, it’s not about abandoning ME/CFS, it’s about doing what works best for ME/CFS. I think you will like how this turns out. 🙂
I don’t disagree that we needed to work with long COVID and support their efforts (and that there are long COVID patients with ME/CFS) – did we have to remove all mention of ME/CFS and support for ME/CFS advocacy to ally? I think that is crazy.
To get the most bang for the buck right I think we actually did. Oddy enough, I think it was a smart move to focus solely on long COVD. It keeps the message direct and simple.
In other ways – in long COVID legislation under consideration, for instance, Solve ME has been sure that post-infectious diseases are included.
They’ve also ironically, got it from the other side. Some long COVID orgs have been upset at the attention given to ME/CFS in some of the Alliance’s advocacy efforts. They don’t want to hear about it at all.
I agree Cort. People need to realize how similar the two diseases are and if there is a cure for Long Covid it will help millions of patients with ME/CFs.
I watched the ‘How Long?’ video the other day and didn’t realise that it’s part of a TV and radio campaign. I thought it certainly made an impact and was well put together.
To me personally, it makes much more sense if Long Covid and ME/CFS advocates work together. I am also aware that there’s understandable frustration from long time ME/CFS sufferers.
But what I see online, is so many chronically ill people with Long Covid and ME/CFS discussing various symptoms, possible treatment options etc. There’s also many high profile Long Covid researchers, sharing their findings online, who are painfully aware of the long term neglect of pwME. They engage with people and I think they’re trying their best to be inclusive.
The neglect and abuse of ME/CFS patients, for decades, is horrific. But the momentum and interest generated by the emergence of Long Covid, may be a way for ME/CFS research and advocacy to move forward too.
The revised ME/CFS NICE guidelines (UK), in removing graded exercise therapy (GET) and cognitive behavioural therapy (CBT) as curative treatments, also seems to be making an impact in changing the treatment landscape, for the better.
Making use of the immense experience from the ME/CFS community, whilst joining forces with the more recent Long Covid community, seems to me, to be the best way to go.
This is from a Twitter exchange in relation to recent research focusing on Long Covid from Putrino Lab, Mount Sinai.. https://twitter.com/PutrinoLab/status/1557665999268233218?t=LVgqq5jVHtEgzre10bn5eg&s=19
Yah! Let’s hope this is a trend. I actually think it will be. If you’re heavily involved in long COVID it just makes so much sense to move into ME/CFS as well.
Putrino Lab
@PutrinoLab
Hi Paula, I hear you and *please* believe me that this paper is the START of the conversation, not the end. We have every intention of adding #pwME and other infection-associated chronic diseases to this cohort. IMHO, our interpretation of these data are limited until we do
This is a fantastic video with Prof Akiko Iwasaki, in which she discusses Long Covid and ME/CFS. Definitely worth watching.
https://youtu.be/7lfGu_UA75A
Cort, I too believe the pandemic / long Covid is the best thing to happen for ME/CFS. My heart does break for the millions more suffering. We all wish that we wouldn’t have been swept under the carpet for decades.
I have hope. Thank you.
20 years of being undead for me.
Does anybody know if any of the long COVID studies will include Ampligen? I WANT TO TRY AMPLIGEN!
I would love to share the commercial with my friends and family, and am looking forward to one specifically mentioning MECFS. But personally, I wish the commercial had real patients representing their ailment rather than actors. While the messaging is good, it just feels disingenuous using actors (which I felt was very obvious). Thanks