Dr Avindra Nath, NIH USA, views on ME/CFS and Long Covid

Nath Is making it clear NIH has essentially replaced researching ME/CFS with long covid, which He bizarrely describes as much more severe.
Who will challenge this attitude &approach &speak up for those with #MECFS ill 40 years? He actually says it would be miserable for pwLC to be ill for forty years when NIH have left pw ME/CFS to that fate, hv barely done even rudimentary research, for eg in PEM, over that time &now wants to replace ME with LC

Who will challenge this further?

non-Covid ME research should Have a research prog of its own as well as being studied alongside LC, including in clinical trials, & getting separate campaigns from the orgs. Isn’t Merging as IACC just facilitating this type of NIH approach, not tempering it? ME subgroups/ triggers, advanced stages & severity deserve focused research, just as MS & Parkinson's, with smaller numbers Affected, get the full spectrum of research their communities need - from early intervention to reversing years of damage. A Covid antiviral isn’t the answer for ME.

NIH, out of the other side of their mouth, say they’re not sure yet ME = LC &ME has a variance in trigger, chronicity & damage that make it harder to treat. A simple fact is that the 2 cohorts in the length of time Ill, management History (amount of harm) & trigger are different, so to substitute ME almost entirely with LC is Unjustified & imo Self-serving after years of neglect

 

ok but that does not equally mean that meeting all the research needs of the long covid community meets all the research needs of the ME/CFS community and the fact the NIH are getting away with not caring much about that is a problem.

 

I’m scared they’ll approve a couple beta blockers for post-covid POTS, figure out some specialised care for COVID related organ damage, conclude that most people with other types of long covid get better with time, and call the program a success. Without having found anything for ME/CFS subtype.

 

Nath slides from NASEM's July 11th 'The Evidence Base for Lyme Infection-Associated Chronic Illnesses Treatment' webinar

https://twitter.com/user/status/1811424072808730676


https://twitter.com/user/status/1811424552964215213


https://twitter.com/user/status/1811424945651552517

 

Physicians are not scientists. In fact, medical training is nearly the opposite of what one would do to train a scientist.

The rare “physician-scientist” needed to go through formal training to learn science, which takes many years. This is why I am very disappointed in Nath's recent comments regarding M.E

And then we have Ron Davis n=1 or n=2 saying that some pwM.E rest for a year and get better

Talk about going backwards.

 

(I know from May 6 CDC call, but sharing for sight)

https://twitter.com/user/status/1812492075197194449


https://twitter.com/user/status/1812497144588169450

 

These seems interesting. Are they good news and how well demonstrated are they? Is there a thread on these anywhere yet?

 

I've been of that opinion for a while now. Nothing past a few years made me change my mind.

He's got it exactly backward. It's ME/CFS that is shedding light on LC, not the other way around. Had he looked at LC in the context of ME/CFS, we may have gotten somewhere. Instead, he wanted to "start from clean slate" because he didn't know if ME/CFS was real and now we are where we are after spending a billion $.​

 

Some snippets from 'Updates from Long COVID Research in the USA with Dr. Joseph Breen of NIAID & Dr. Al-Aly' today

https://twitter.com/user/status/1813266247968014683


https://twitter.com/user/status/1813266694686843334


https://twitter.com/user/status/1813267387585819125


Breen: "Well, we take our direction from the NIH Director, so..she’s said a little bit about what she hopes going forward..right now, we’re putting into place a way for that to happen. I think, there was a balance of approaches that were chosen in this round, and that was…in the past, and we’ll have to make different choices in the future. We’ve certainly heard feedback and understand why there is a focus and a need for basically, drug-based interventions moving forward."

Breen: "It's anticipated that there will be a way for public input from the academic community, the patient community...from Dr. Nath...so there should be an opportunity for all that to be considered when there is a formal process that's open to all for how this is going to be completed - I think that is what is yet to be really announced or made public, but Dr. Bertagnolli has stated her intention moving forward."

Breen: “RECOVER has tried really hard to include lived experience individuals, advocacy organizations, the stakeholders..trying to do that in an even more transparent way, is a goal..the intention certainly is to take input & be as transparent as possible..these are public funds…the burden..so we want to be as open and transparent as possible.”

 

https://twitter.com/user/status/1814737795724026016