Discussion in 'Health News and Research unrelated to ME/CFS' started by Jaybee00, Dec 5, 2020.
Am listening now. Very good!
At 31.42 he says:
We have long dismissed chronic illnesses like Myalgic Encephalomyelitis, dysautonomia and many others. Illnesses, many of which are tied to the long term effects of viral infections. And the result of this dismissal means that now when many Covid patients have developed similar long haul patients (I think he means symptoms) doctors have had very little to offer them. Say for yet more dismissal.
I think that this point needs to be made clear: long haulers do not have much more being offered right now than we've ever had. They have attention, but they do not have competent medical care yet. It is the research and long-term studies that will make progress here, but what is offered to them so far is either mostly the same old tripe or really nothing. Nothing to be envious about.
And more than anything it shows that attention is entirely useless on its own. The entire point of having medical attention is that it is the necessary first step towards effective treatment. But without actual treatment, thanks to flat-out refusing to do the research for decades, it's really all useless. This is where the subsequent steps either happen, which they seem to right now, or are refused, as was the norm and which lead to yet another identical failure for the same reasons by the same people.
In truth, the only useful thing long haulers have going on for them is that they are getting the advice we should have gotten from the start. This is coming from the chronic illness community and the few experts on our side. Nothing useful is coming from the normal channels of medicine. But it is making a huge difference. I can see it, so many comments from people saying rest and pacing were crucial to getting some stability, along with growing despair from those who could not, usually because they have no meaningful help, and are seeing their health turn worse with time. There's a lot of despair out there from those who do not have the primary support for every day life that affords rest. Had we not been there, with decades of relentless efforts, long haulers would have been sooooo fucked if left entirely to medical care(lessness).
All that clinical attention is still largely performative, it goes from enthusiasm to frustration really fast when patients don't recover or fit the old molds. It is still largely ignorant and incapable of going to the right conclusions because of what has been done to us. The obvious has to be avoided until every alternative has been tried and failed.
This is a research and public health problem, one that fails at the start by refusing to even monitor the spread and scope. So this research will benefit all of us, or at least most of us. But the clinical support? It's only marginally better and a lot of it is just as insultingly bad.
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