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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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As the Russians say: Trust, but Verify.
As the Russians say: Trust, but Verify.
full blogThe National Institutes of Health’s (NIH’s) ‘New Deal’ for ME/CFS, particularly the intramural study, has had a very mixed reaction from the patient community.
Patients have criticised both specifics of the study, such as using the controversial Reeves diagnostic criteria, and the failure to consult patients from the start. The lack of new cash for new studies so far has also led some patients to doubt the NIH’s commitment.
Francis Collins tells patients “We are your partners
During the recent tele-briefing the NIH was clearly trying to mend fences. Director Francis Collins kicked off the call saying, “We are your partners”, and throughout the call senior NIH staff stressed how keen they were to listen to patients.
Collins emphasised that the NIH wanted to work together with the community to crack ME/CFS. He said, “We want to hear from you, that’s why we’re having this call today. And we’re listening carefully to the comments and suggestions you might have about how best to move this effort forward.”
...The sentiments and plans are all great, and I can’t think of another ME/CFS study or research programme with anything like this level of patient engagement. The NIH deserves a good deal of credit for this work.
Of course, there is a lot of history with the NIH and patient community, where many in the community are angry with the NIH and still distrust it after decades of pitiful funding for ME/CFS. It will take time for trust to build from such a low base
....
Thanks for an informative summary. My impression is that the NIH team are genuinely trying to get this right and I wish them all success – we need it. My only caveat is that if they want to convince other researchers in the field that they are unbiased they are not going to get very far saying ‘there is no bias at the NIH’. Productive collaborative science comes from everyone admitting that they are struggling to minimise the sea of bias that threatens to engulf us every minute. Good scientist joke and apologise about their biases and admit that nobody is better than anyone else from having a name on the doorway. What counts is good study design.
International dialogue in ME/CFS research is now very good and we hope the NIH team will participate in that as soon as they have some data – or even before!
So they didn't mean the bit about being our partners? Then why say it?
So they didn't mean the bit about being our partners? Then why say it?
It could be 99% there, but if the 1% remaining happens to have teeth and venom, it still could be dangerous.
NIH to patients, “We are your partners”
Jeanetter Burmeister said:I successfully sued HHS and NIH in federal court for violating FOIA and the Judge found the agencies’ conduct to be unreasonable to a degree that led him to order both agencies to pay all of my attorneys’ fees, more than $139,000. The award of attorneys’ fees is by no means a given in FOIA cases; it requires a high level of unreasonableness on the government’s part.
What ever happened to the investigation into the claim that CFSAC reports were being altered between being approved and being delivered to NIH?There is already a two-way communication mechanism - it's called the "Chronic Fatigue Syndrome Advisory Committee". It's only been around since 2003. Perhaps someone should tell Dr Collins about it.
What ever happened to the investigation into the claim that CFSAC reports were being altered between being approved and being delivered to NIH?