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.
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
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.