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

 

ME Research UK:

A quote by Dr Avi Nath has left many disappointed.

“…the population affected by #longCOVID is so much larger and the symptoms are so much more severe compared to ME/CFS that we decided that what we should do is focus on long COVID.”

Read commentary: https://bit.ly/4fCZFya

 

Nath's grotesque statements "left many Disappointed"?

His statements left anyone with half a braincell Disgusted, more like.

And Livid.

And frightened - if Nath's views represent the views from within the NIH then looks like we are in for another 4 decades of the NIH trivialising and neglecting ME, and trashing the patients.

,

 

Nath, the guy who wanted RECOVER to start with a clean slate, is obviously still making distinction between LC and MECFS. He is intent on again repeating what's been going on with MECFS for the past 40 years instead of building on the experience with MECFS. There is no hope as long as he is in charge.

 

Uh, the symptoms are exactly the same. Every public utterance by this guy has been frightening.

Since no one at the NIH has disavowed any of his unhinged statements about us, I take that as a sign that he represents the majority view there.

 

I don't mean to burst anybody's bubble, but some might suggest the NIH already has a policy template of sorts- and has for half a century. "Posture, mischaracterize, punt" is a seasoned approach and they're very good at it.

As for the personnel, plug and play appears to have worked fine.

This effort preference and interoception thing, imo, is just a new tool to hammer in an old nail that they can use for several conditions.

 

Nath’s effort preference seems to be ZERO (and my other thoughts I’ll keep to myself)

 

Er hasn't he heard of Whitney and Maeve and Merrin and everyone ???
Talk about chucking patients under a bus. First effort preference then this. It's almost like he's decided it's psychological after all despite his ownership research !
Whyever not compare the two and get richer insight?
This on top of the inquest is doing me in

 

https://twitter.com/user/status/1826797411416900098


Full text available here:

https://www.neurology.org/doi/10.1212/WNL.0000000000209742