Avi Nath

[Quilp]

How much longer do we have to wait until the NIH intramural study is published ? Avi Nath - can he give us an idea - any idea ?
Why do we have to wait so long. Many of us are hanging on. Many of us have long gone.
I need something to hold onto. I can wait, but I need to see the finishing line. I can't take this anymore.
This study has been ongoing for almost seven years. Even allowing for the pandemic, who thinks that is acceptable. So they find some differences that have been found before. They move the data around a little and then suggest more funding to do this and that. Another five years go by and then another study comes along to reinvent this giant wheel that goes around and around without getting anywhere.
I have been ill for almost twenty eight years. I see no conclusions, i see no answers, and i see no treatments.

 

[Quilp]

I have just read this again. I am so so negative. I hope i am wrong, so very wrong and that something is published. Didn't Nath suggest in May that they were looking at several treatment options ? That the field was going to ''move forward in a big way'' ?
Have the results been shared with other groups like the OMF ?
This is so hard.

 

[Consul]

I think it was May yes. And a few months ago they said they were ready to publish again. And now it appears that they havent published it yet but are close. I think they should just do a preprint now, this is taking too long.

 

[Rufous McKinney]

We need a Congressional Investigation.

Lets figure out what committee would look into things like NIH never completes/reports on the study and we now have X million victims plus X Million Long Haul Victims.

 

[Quilp]

I think Avi Nath has rejected the preprint. He wants it printed up in a major journal. I think someone wants to see their name in lights, If, as he says, he feels bad that it's taking so long then a preprint would have been afforded us months ago, possibly over a year ago.
I feel as close to being buried alive as i can be whilst being above ground. I cannot even get angry anymore.

 

[Quilp]

But it would seem he has time to sit down with Cort and tell him very little about almost nothing.
Sorry I know I am coming across as being bitter - and that's because I am.

 

[BrightCandle]

The NIH has repeatedly shown that ME/CFS patients have no reason to give it the benefit of the doubt, its broken its promise to continue to investigate ME/CFS, which it abandonned in 2020 for the much sexier Long Covid and hopes we get the scraps of that to help pwME too. There is every reason to be angry that they have spent nearly 3 years not publishing the results of a study that they think will be critical. The lack of urgency with millions suffering is sickening as is the break of the promise to keep digging into the condition until the root cause was found, that promise did not last 2 years.

 

[Rufous McKinney]

The lack of urgency

Have any of the ME /CFS NGO's put together any kind of summary of= what we wish was happening only it isn't?


I have some contacts that I can lean on if I had more: bulleted facts. I can't do the leg work to figure out how to describe what is wrong and what we need.

If that existed in bulleted form I"d attempt to convey the info to somebody who might be in a position to get a Hearing to Happen.

 

[Belbyr]

I’m going to hold out hope for this guy, he seems sincere ‘enough’. Is there an ETA on a paper? I think I read somewhere he made a statement about potential treatments?

 

[Belbyr]

Watch this!

 

[Rufous McKinney]

The date on the video of Dr. Nath above is about one year ago; 437 +/- views; 12 likes


Thanks for posting it!

 

[Quilp]

I have emailed ME Action to see if they can ask the NIH for a reason as to why this is taking so long. Perhaps they can assert some pressure on the NIH.

So we have Avi Nath who stated in 2016 that he wanted to first find out if this was a real disease ( so you didn't think or want to ask your colleagues, Lipkin et al ) and Brian Wallitt who thinks ( or did think, who knows maybe he's changed his mind ) that this illness is pyschological in origin.
Nath says that they are meeting at weekends - not Monday, not Tuesday, not Wednesday, not Thursday and not Friday, to ''write up'' these results.

Avi Nath - ''Long Covid has pretty much taken over my life''
Me - ''ME/CFS has taken away my life''

Avi Nath - ''results are fascinationg''
Me - ''Not if they never see the light of day''

Avi Nath - "These results should help patients''
Me - ''Not if they die waiting for the results''

Avi Nath - ''These results will move the field forward in a big way''
Me - ''Forward where, the long grass ?''

Avi Nath - ''Long Covid and ME/CFs are pretty much the same with some differences''
Me - ''Yes, one illness is dismissed, marginalised, neglected and one one is welcomed with open arms''

The irony of all this is that if they had only taken ME/CFS seriously decades ago then Long Covid wouldn't be the monster it is now.

 

[Quilp]

and the objective of this study - soon to be running into it's seventh year, wasn't to find the reason why we are so sick, but to identify future avenues for research. You couldn't make this crap up. Seven years to wait for this ?

It feels like a game to these people. Do they not realise how much we are suffering ? htf am I still here. I can't believe I made it to almost twenty eight years. I am amazing, incredible and almost unstoppable. I am also dying. My body is beginning the great surrender.

 

[MonkeyMan]

The irony of all this is that if they had only taken ME/CFS seriously decades ago then Long Covid wouldn't be the monster it is now.

Yes!!!! And I hold Anthony Fauci accountable as well. Just callous indifference for decades, probably because big pharma didn't see any financial upside to working on the problem.

 

[Rufous McKinney]

I have emailed ME Action

GOOD.

Pressure Pressure Lets keep finding others to PUT Pressure

Nath says that they are meeting at weekends - not Monday, not Tuesday, not Wednesday, not Thursday and not Friday, to ''write up'' these results.

Did he really say that (yes, I listened)??

Thats the big reveal. It tells me alot (as an ex -government bureaucrat scientist). I wrote my huge report on weekends, too.

It won't help to point out to the public just how understaffed and buried government bureaucrats are. Their agencies are maintained in a defunded state. Work load has nothing to do with staffing levels. Your buried.

The stress levels are incredible: see the toll it took on RUFOUS.

 

[Pearshaped]

and the objective of this study - soon to be running into it's seventh year, wasn't to find the reason why we are so sick, but to identify future avenues for research. You couldn't make this crap up. Seven years to wait for this ?

I hear you. Thats what I thought.
hats off to you, you made it all the way and are still around, after such a long time.
my body is a mess and im only 7 years in. Dont give up, you must have had a long painful road but you made it this far.
Dont loose hope. Remember Antibiotics were „found“ by chance, Aspirine as well.
someone might find something for us when he is not really looking for it.

 

[Quilp]

Mark,

I agree the delays in getting this study published are frustrating. We've repeatedly inquired about the time table for this study to be published and expressed its importance (there are other papers that can't be published until this one is).

Sincerely,

Ben

I received the above reply from ME Action a few days ago.