USA: News from Solve ME

Solve ME sent out email reminder for their next webinar:

Full details and registration link here:

https://solvecfs.org/event/cdc-update-recent-strides-in-long-covid/

Find the time in your time zone here:

https://www.timeanddate.com/worldcl...binar:+CDC+Update&iso=20230329T10&p1=137&ah=1

 

Meet the Members of Solve’s New Lived Experience Task Force (LET)

https://solvecfs.org/meet-the-members-of-solves-new-lived-experience-task-force-let/

 

From a Solve M.E. email:

Announcement here:
​

https://solvecfs.org/event/38107/​

Register here:
(this link includes a time zone conversion tool)
​

https://us02web.zoom.us/webinar/register/WN_WE2pepSrQoSmx420dn_A4w#/registration​

Video from the 2022 EmPOWER ME session is here:
​

https://solvecfs.org/advocacy/empower-me/​

​

 

From a Solve M.E. email - webinar on sleep issues is scheduled for Thursday, April 27 at 11 am Pacific time:

Announcement here:

https://solvecfs.org/event/effects-of-long-covid-and-me-cfs-on-sleep/

Register here:
(this link includes a time zone conversion tool)

https://us02web.zoom.us/webinar/register/WN_C-d6_Le1RAe-0j62e_5d1w#/registration

 

Solve Spearheads Call for New NIH Office for Infection-Associated Chronic Illness Research (IACIR)

"This year, Solve is beginning one of our most ambitious advocacy projects to date — one which could alter the research landscape for ME/CFS, Long Covid, and other infection-associated chronic illnesses for decades to come. We’re calling for the creation of a new, dedicated office at the National Institutes of Health (NIH).

This office would be responsible for overseeing and coordinating research and development efforts into infection-associated chronic illnesses within the NIH, accelerating research into a multitude of related illnesses, including ME/CFS, Long Covid, fibromyalgia, multiple sclerosis, chronic lyme disease, and POTS, among others. Currently, these diseases are funded across multiple centers and institutes without any method of synergy or oversight to avoid duplication.

There is tremendous value in creating a centralized office to coordinate this research. The multi-systemic nature of infection-associated chronic illnesses requires that research stretch across multiple specialities, focusing not only on specific bodily systems, but the interactions between them. "

https://solvecfs.org/solve-spearhea...on-associated-chronic-illness-research-iacir/

 

Thread here:
https://www.s4me.info/threads/long-covid-clinical-drug-trial-texas-usa.33379/

 

This is seriously so disturbing it could derail SolveME's future efforts, wondering how the hell did they think this is a good idea and if they have their priorities set straight. Honestly between this and deciding to do a GET trial, I'm not entirely sure which would be the most absurd.

It's beyond obvious that such an institute will need to happen, and it's too early to do the right thing, too much cultural blockage, but it will likely happen using AIDS research as the foundation and centered on immunology with lots of cross-disciplinary work. Frankly that AIDS continues to be its own thing separate from the rest is starting to become a bit embarrassing. It's way past time to build around those foundations and work out the impacts of chronic infections and the long-term impacts of infectious pathogens.

Maybe they are trying for a compromise, sensing that doing it right the first time around is not politically viable, but we would be stuck with the consequences of building it wrong for too long. Again. This is one of the worst ideas to come out of the sane side of ME research in a long time.

 

It sounds political to me, and it's possible there could be reasoning behind it. For instance, if they happen to know there are going to be big bucks available for a series of projects to redress the historic imbalances where research was always based on male bodies because female ones are too complicated, they may have taken it as a pragmatic decision.

I'ms second-guessing, of course, and the real truth might be exactly as dumb as it sounds on first reading. But if it is a way to access bigger or longer-running grant programmes, the fact that it appears unlikely the perpetuating mechanism is completely different in men and women might mean there could be some merit in the approach? (Yeah, I know, I have a really annoying habit of looking for the positives. )

 

CFS, as it was known then, was originally housed in the National Institute of Allergy and Infectious Diseases (NIAID) until it was thrown out from there and landed in the Office of Research on Women's Health (ORWH). For many years, this move was decried by advocates as, unless things have changed, this is a very small office with a very small budget with very limited funding for research programs of any kind. "CFS" languished there for years. It was a happy day when it was finally taken out of this office. So, I find this idea from Solve quite shocking. I would like an explanation from Solve as to why they think going back to this is a good idea. Also, I find this insulting to the many who are not female but who also suffer from post-infectious chronic diseases.

 

Yes, I'd also guess this plays a role, go where the funding is. I don't think it's a bad idea per sé; reading Willow's comment above, I'm more worried if the ORWH can "carry" this project.

 

My understanding is as @Willow says, that this batting back and forth has done nothing but play into the hands of political opponents for at least the last ten years.

I get the impression that Solve ME is run by people who don't actually have any understanding of the realities of medical research, or medical politics for that matter.

This statement:'It is a common feature of infection-associated chronic illnesses to disproportionately impact women — ME/CFS impacts women 3-4 times more often than men. Like many autoimmune diseases, the predominant impact on women is cited as a factor for underfunding, dismissal and stigma.' is just a mish-mash of disinformation.

 

Only scanned -
"accelerating research into a multitude of related illnesses, including ME/CFS, Long Covid, fibromyalgia, multiple sclerosis, chronic lyme disease, and POTS, among others."
multiple sclerosis - we know the cause of most cases - it follows EBV infection, only 1 of 30 ish cases, in the US Army study, didn't follow EBV. As per Jonathan's comments you can treat multiple sclerosis using rituximab. Plus you can diagnose multiple sclerosis & there's a biomarker. Plus an EBV vaccine would prevent most cases (90+%)---

The remaining examples "ME/CFS, Long Covid, fibromyalgia, [delete multiple sclerosis,] chronic lyme disease"
can be investigated via large genome-wide association studies (GWAS). Why don't Solve run a campaign highlighting that we can now make progress in diseases which are currently of unknow cause and have no treatment options ---GWAS and potentially whole genome sequences ++?

Solve seem to be suggesting that we need a new Department --- a cynical bureaucrat might decide to go for that. Not to make any meaningful progress but to do some widow dressing! Guess that's what folks here are concerned about.

Luckily Vicky Whittemore [NIH] won't follow this - she'll aim for genuine attempts to move things forward-
"We are currently in the process of developing an ME/CFS Research Roadmap and Genomics/Genetics are one of the topic areas under discussion. We are aware of the studies you mentioned, and Chris [Ponting] is involved in the group that is discussing genomic/genetic research on ME/CFS. There will be a series of webinars open to the public in the coming months that will provide perspectives from experts in the field regarding research priorities for ME/CFS. If you are not already, you should sign up for the NIH email listserv so you receive notices of the webinar series; go to: https://www.nih.gov/mecfs"
https://www.s4me.info/threads/deep-...ction-mina-nath-et-al-2023.33187/#post-474237

 

Caregiver Corner: Resilience Tools for Difficult Times
June 26 @ 1:00 pm - 2:00 pm PDT

https://solvecfs.org/event/caregiver-corner-2/

Registration link: https://us02web.zoom.us/meeting/register/tZIlcuuqrjIiG9ekiT1sgq-QGhKmTReK9gz2#/registration

Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=Solve+M.E.+Caregiver+Corner:+Resilience+Tools+for+Difficult+Times&iso=20230626T13&p1=137&ah=1

 

Yes, not so good this is aimed at carers specifically.

But on a general level, I do think society has a problem with consumerism and all the advertising of material possessions as being seen as the way to happiness. And the US society has a bigger focus on consumerism than most societies.

Also if people spend most or all of their free money on non-essential purchases, they may have little or nothing to donate to ME/CFS causes including research. Some people think governments should pay for all the necessary research but the budgets aren’t nearly big enough to do that and without private money, an illness can be left with fewer researchers to make grant applications particularly those with pilot data so may not get a “fair share” of government grant money.