By David Tuller, DrPH
*This is a crowdfunding period at University of California, Berkeley. If you appreciate my work and would like to make a donation (tax-deductible to US taxpayers) to the university in support of my position, here’s the link: https://crowdfund.berkeley.edu/project/46120
It’s been five years, more or less, since the start of the coronavirus pandemic–and the subsequent wave of Long Covid. I spoke earlier today with Jaime Seltzer, #MEAction’s scientific director, about how early links were forged between advocates for people with ME and those experiencing what became known as Long Covid, what we’ve learned since, and where things are now. Seltzer was included on Time magazine’s list of the 100 “most influential people in health in 2024.”
How do we clone these two people?
Thank you!
Proper research and accountability for decades of false, abusive claims is urgently overdue. If you’re reading this, please ask all supporters to donate to the fund to support the reporting on these issues by Dr. David Tuller. Post. Comment.
The question about pw ME/CFS feeling swamped out / replaced by attention on long covid instead, as far as i can see wasn’t really answered. I think people with long covid & ME-type long covid have had US ME charities working hard for them the past 4 years, work they consider important and rewarding. Rightly or wrongly, as someone with very long-term severe ME & damage of the type NIH Nath said would be hard to treat (and they seemingly had no intention of even going to try) I don’t feel represented or prioritised. This may be because because I am not, or because messaging hasn’t been good, or I’m not clever or with it enough to appreciate how US long Covid efforts truly serve ME needs or is the best we could hope for.
It seems that some ME sufferers don’t feel represented sufficiently and perhaps feel that, these days, they are being overlooked in favour of Long Covid. This is why I think it’s important for them to grasp that the rise in UK economic inactivity due to ill health that is damaging the UK economy now did not begin with the Covid pandemic but rather began years before that in women and, to my mind, coincides quite well with a push on teaching to UK doctors about MUS/functional illness and a roll out of a MUS/functional strategy to cut costs across the NHS. Historically, a proportion of ME sufferers tried to resist discussion of MUS, insisting that they did not fit in that MUS mental health category, that ME was not MUS. In doing that, I think the were cutting off their noses to spite their faces and I gather that many or most of them have come to realize that. Nobody was saying that the categorization was correct, but sometimes it’s necessary to engage with offensive political constructs because of the harm that they’re causing, not only to your own group but others too. When something is adversely affecting a vast swathe of people, including you, why would you isolate yourself and try to fight a lone battle? To my mind, Long Covid helps to prove that the warped BPS strategy is flawed and that it’s causing real harm to countries’ economies. But, in the UK, that harm started before the pandemic and the UK government needs to think about why that is.
I’ve just looked at David’s crowdfunding page (with about half an hour left to go for donations) and the largest contributing country by number of donations, by far, is the UK. I suspect that’s because of the determination of successive UK governments and the NHS to manage what it considers to be MUS, including ME, in a particular political way. ME was seen as the prime exemplar for the management of MUS (see here -https://www.sciencedirect.com/science/article/abs/pii/S0163834397803155) which, I believe, is why UK ME patients have paid such a high price and continue to. It seems to me that the UK economy is now paying a heavy price for that management strategy and Long Covid is accentuating the effect of that too. I’d strongly contend that Long Covid is helping to make the political argument for ME sufferers across the globe. ME sufferers need to understand and embrace that, I think, and not isolate themselves but instead work together with Long Covid sufferers as well as other MUS sufferers to overturn this political construct. (But Long Covid sufferers should do the same in return, I think, and not try to dominate by force of number. )