Two Years In and the Weight of Doubt Grows Heavy

At no time in history have people been more aware of ME/CFS than now. But while awareness is a great thing, some of the attention that has come to post viral conditions comes unwanted publicity to the chronic illness community.

The National Institutes of Health (NIH) recently announced details on its four sets of trials that are currently making up the RECOVER initiative for Long Covid and, in turn, ME/CFS (hopefully).

While on the surface this might look like good news, many patients and advocates are disheartened about some of the methods.

Two years into the four-year initiative, the $1 billion project has reportedly run out of money, and they won’t be asking for more. There is only one drug trial – for Paxlovid – that has been delayed multiple times. RECOVER also seems to be playing by the same book as the biopsychosocial model with careless and simplistic remedies such as exercise.

If ME/CFS and Long Covid patients could exercise our way out of this living nightmare, we would have done so long, long ago.

The devastating experience of having ME/CFS has been and continues to be buried in narratives of bravado worldwide. Illnesses in which the patient doesn’t die but doesn’t recover are forgotten. Their inconvenience is too complicated. Let’s move on to a nice, neater picture and forget this mess.

As my own illness has gotten worse in recent months, I remain sorely disappointed in the lack of serious consideration of post viral illnesses and the impact they have on so many lives. As discouraging as it is, the RECOVER project had me thinking of ways to convey this illness, although doing such a thing seems impossible. I thought of Hilary Johnson’s Osler’s Web, in which no major authorities at the CDC or the NIH ever saw or spoke with a single ME/CFS patient.

It had me wondering what might happen if someone — anyone — at the NIH talked to any family members of those participating in vague “observational studies” that are currently happening. Transparency seems to also be an issue with RECOVER, and it’s unclear to me what is happening in these observational studies.

As ME/CFS and Long Covid patients, our families and friends can often attest to the brutality of post viral illness. As patients, we can capture it even better. The monotony, the hopelessness, the cycle of feeling better only to feel worse again — contrast this with our lives before. But then, most doctors and healthcare workers are just as disbelieving of the friend or family member as they are of the patient.

This lack of recognition and transparency vastly increases the suffering of those of us with poorly understood conditions like ME/CFS and Long Covid. Post-viral diseases need to be treated like cancer. We need national research centers. We need massive funds moved into research and drug treatment development.

But this lack of competence is nothing new in the caustic politics of post viral illness. I wonder how much the folks running RECOVER listen intently to the patients under their care. I’m incredibly disheartened to hear about other studies in which, by the two-year mark, are well into several drug trial processes. What are they doing? Why is Paxlovid the only potential drug and why does it keep getting delayed? I hate to sound pessimistic, but we may never know.

I deeply feel every single day the horrible impact ME/CFS has had on my life. Every day, I profoundly feel the weight of the decisions made by the NIH and the CDC in years past to try and erase ME/CFS and post viral illness from public conversation. I feel it when I go to bed, knowing I won’t know how I’ll feel the next day and there’s nothing I can do about it because no treatments for my condition were ever developed.

As ME Awareness Day approaches on May 12, I wish I could be there in Washington D.C. to protest with the Millions Missing, but I am not nearly well enough to make the trip. I do what I can, though, by participating from home, just as I did last September the day after President Biden announced that the pandemic was over.

I speak of the state of post viral illness in the U.S., but unfortunately this minimization and dismissal is occurring worldwide, with governments slashing funds and shuttering programs aimed at treating post viral illness. The myth that most Long Covid patients recover after a year is a simplistic and false narrative that is flourishing far and wide.

Sometimes I feel hopeful. After all, there are researchers and organizations that are working hard to unlock the mechanisms of post viral illnesses like ME/CFS so people like me can finally get relief. But on a grander scale, it looks as though history is repeating itself as the NIH and similar institutions in other nations take antiquated, ineffective “treatments” and rebrand them. As always, though, we can see right through it.

—Bridget O’Shea