Politico: He Was Given 6 Months to Live. Then He Changed D.C. (Brian Wallach ALS)

He Was Given 6 Months to Live. Then He Changed D.C.

https://www.politico.com/news/magazine/2022/01/14/brian-wallach-als-advocacy-527094

 

Has there ever been a significant effort to do DC lobbying for ME/CFS? I realize nobody that well connected has likely become ill/had a family member become ill with this. But it does seem like to get anything done you have to hire at least one lobbying firm.

 

SolveME are doing pretty good on that front. The $1.15B NIH funding would never have happened without their lobbying efforts going back years.

 

This also looks interesting:
https://twitter.com/user/status/1484256643261022208

 

The only problem is that the $1.15B is for Long COVID. If we are lucky, some of the work will also help us, but I really hate depending on luck. Especially when it has been explicitly stated that these funds cannot be used for ME/CFS studies .

 

Where has this been stated? I did not know this

 

They have said it a bunch of times. Here’s one:
“In fact, at an NIH RECOVER initiative public briefing on September 15th where a $470M grantto NYU was announced, the principal investigator Dr. Stuart Katz said that their research would not include other diseases as comparator groups such as ME/CFS. In addition, we are concerned that the current research protocol does not provide methods for identification of ME/CFS in Long COVID cohorts.”

https://www.meaction.net/2021/10/21/is-nih-blowing-another-opportunity-to-advance-me-cfs-research/

 

In fact, this isn’t surprising since Congress allocated the funding specifically for Long COVID. It would be possible to be more inclusive of ME/CFS as a comparative group to Long COVID, but so far, there is no commitment to do so.

 

You wonder what is going through their minds when they made this decision?

It's like the people making the decisions have learned nothing from the past...

 

Yea James Baraniuk used people with ME/CS as a comparator group for Gulf War (syndrome?) so maybe it's possible to get ME/CFS in that way. Better to have ME/CFS as a named condition though.
There's been some talk that the EU will use "poorly understood diseases with a high disease burden" [EDIT - which would, of course, encompass more than Long covide i.e. ME/CFS, Lyme--- ] @Michiel Tack

Anyone here involved in Solve?

https://www.frontiersin.org/articles/10.3389/fphys.2013.00181/full

 

Mostly hoping they won't find what they're going to find. That they will something else entirely that can leave discriminated chronic illnesses behind. Heavily tipping the scale for this outcome, which will make those avoidance efforts especially foolish but what's a few more years of more foolishness after decades?

 

How can you effectively study Long Covid without acknowledging that a significant proportion of patients will have developed new ME/CFS? Is this why it was agreed to put PEM in the Long Covid case definition in the US?

 

I think because LC, PVFS, and ME have such nearly identical symptoms in so many people that this LC research will truly help us, even without recognition. I don’t care if they interchange the name of what looks to be the same underlying disorder

 

I bounced Solve an email suggesting they maybe try to get ME/CFS as a comparator but not sure they picked up on that ---- they were more interested in potential research re activity management.

 

ALS is truly kicking the butt of MECFS vis-a-vis both funding and awareness. Again, makes me consider whether ALS is that rare and MECFS that common (as stated).