• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

From Cort's site: Success! Nath Reports the Big ME/CFS Intramural Study Points to Possible Treatment Options

Rufous McKinney

Senior Member
Messages
13,249
people leak first drafts of secret documents. What its this, two years or so to wait?

Just the fact that NIH confirmed many things wrong in our bodies, should be the lead story.
 

Treeman

Senior Member
Messages
773
Location
York, England
Despite that Avindra Nath reported that the study found consistent biological abnormalities and that the results were going to move the field forward “in a major way”, including toward clinical trials. MEAction reported that Nath already had some drugs in mind to try.

can’t imagine that they have sth that hasn’t been tried before

I agree. However it does push the research on a bit more, that has to be good.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,995
How can the Simon Wesseleys continue when our NIH has found consistent abnormalities? When does it ever shut those people up?
Retirement.

They are not interested in evidence based medicine, they have created an ideology and reality is a threat to their nonsense.
Now once we have a biomarker or treatment no one will listen to them.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,995
I am currently trying nicotinamide riboside and its doing squat (but i had no way to know before trying it).
I would love to look at every piece of the energy cycle and see what has been tried on it and what could be tried and see what happens, but i don't have the cognition to do so.
It seems like they have done something similar but of course went way further as they have every diagnostic equipment in existence.

So i imagine they have found things but until we have details we have nothing to go on.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,995
true, but the funding agencies should be very interested in further waste of cash.
I would suggest approaching them when get to that stage, not only defund them but redirect that funding to legitimate research.
Until now they were the only voice with treatment ideas and that gave them default credibility, when there is something more substantial to go on they will be yelling into the abyss.
 

RL_sparky

Senior Member
Messages
379
Location
California
From the IIME site:

"Due to the pandemic the International ME Conference Week events in London for 2022 have been amended.
The pandemic has continued to disrupt plans for our annual events and the charity has decided to reschedule some of these events.

Due to absence and unavailability of some of the researchers and clinicians then the benefits of holding these physical meetings, with likely reduced audiences and speakers, would have have been comparatively few and the trustees have decided it better to arrange a new date for some of these events in order to maximise the benefit.

The planned #IMECC1 Clinicians Conference and the #IIMEC15 International ME Conference 2022 are to be rescheduled.

The #BRMEC11 International Biomedical Research into ME Colloquium will continue take place on 18-19 May.
IiMER will be arranging a webinar at a later date this summer but, for now, we will concentrate on the #BRMEC11 research Colloquium as that brings together researchers from around the world and provides great benefits for people with ME.

Already we have arranged meetings for 2023 and are looking at other options for this year."

https://www.investinme.org/IIMEC15.shtml