US Senate passes historic resolution on ME/CFS

Amazing news coming out of Congress this week! On May 23rd, by unanimous consent, the United States Senate PASSED bipartisan Resolution, S. Res. 225 “Supporting the goals of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day”. Also, this week the House introduced an identical, bipartisan resolution, Resolution 399.

https://www.meaction.net/2019/05/24...R9sGY8T5CpqouPO_iMQyyJoBs31--edEMjUhqKlBo3kuc

 

thank you to the activists. i am in awe.

what is the frequency of senate-only resolutions of this type? can we assume this is not the type of thing that gets signed into law even if the house does the same?

can we start to expect support from both major parties, without any one party in particular expressing reservations? what is the sense here by the activists?

what is the typical trajectory from symbolic actions to real actions? is it just awareness -> real actions or are there things taht need doing inbetween?

the resolution says the senate supports the goals of awareness day. who sets the goals of that day? are the goals written?

is there a democratic means of adding to these goals? is this democracy genuinely accessible to all pwme at all severity levels that permit communication?

good that research and awareness are promoted. wondering who decides what to leave out.

why is there no acknowledgement of death, profoundly severe?

why is there no acknowledgement of survival [i.e. without it you die but not provided in the usa] service needs and similar [e.g. carer] needs of profoundly severe and severe and bedridden and housebound? services were enacted as laws for aids. perhaps they were also put into symbolic resolutions?

can this be added to the goals of that day?

a significant number of early deaths are probalby caused by mere lack of food medicine hygeine etc. -- including many pwme who are not online and have no carers thus nobody to talk about them online thus no awareness in the m.e. commuunity. can we substantiate that and put that in as a bullet point in future similar resolutions?

again thank you to the activists.

 

This is potentially very good and no small feat given the current gridlock in the US Congress.

The house still has to vote its own but unanimous consent from the senate makes that very likely.

There is a clear void of leadership in medicine. It's sad that politicians have to force them to do their job but here we are. In recent comments Collins basically said he wouldn't do a damn thing until forced by Congress. Well, here we are. Not quite forced but it's indefensible to continue to refuse to have any coherent plan and refuse to take on the bare minimum of leadership.

This year is the 50th anniversary of the WHO recognizing ME. We still face such systemic discrimination that we have to hide this illness from most medical professionals under fear of reprisals and being dismissed with prejudice. 50 years of willful neglect and it's damn time to do something about it.

 

Very good news, its only a start but an impressive one. IIRC there was something similar for MS back in the 70s(?)

It will be a very long process. Perhaps even longer then this was but the longest journey begins with a single step and we must persevere until we succeed.

Indeed though what comes next will be even harder. We should not forget how hostile the right is in regards to ableism and taking healthcare away from people instead of giving it to them. We must not take this as a sign they are on our side, until the legislation is passed and the money is cemented we are still fighting for the basics.

Not unfair in the slightest. The NIH has acted in bad faith and continues to do so. They still claim they have money at the ready but no one qualifies. Can't have it both ways.
They still lie to us, they still gaslight us, they still make us run in circles. This can change without any congressional action whatsoever, its as simple as a decision to stop acting in bad faith.

 

Solve ME/CFS article about it, https://solvecfs.org/u-s-senate-passes-me-cfs-resolution-while-house-introduces-matching-action/

 

I respect your point @Sean ,however, we cannot get over the fact that he, for instance, attempted to take credit for the nanoneedle while he tried doing nothing AND had not made effort for future contibutions for ME/CFS. What does that tell you? I think everyone respects the hardship of being the NIH director for he has to witness individuals with illnesses so debilitating that it could break one´s heart and has to make tough decisions. But the signs tell us that he could potentially be heartless, making him unworthy of his position (having empathy for others, despite having a PhD, is a very important characteristic).

 

Interesting, It will be easier to have the house pass it then the senate (in theory)
Once they do what happens then, does it need presidential signature?

 

Collins doesn't need money to correct the cruel discrimination we have been subjected to for decades. This is 100% free. He's just letting the IOM report gather dust and not bothering informing about what is clearly unethical systemic discrimination. As long as we have denial and contempt hanging over us it's nearly impossible to gather the allies we need for politicians to act.

I'm not saying he can solve this all by himself, but he's avoiding taking even the smallest steps. Even on steps that require no expenditure I'm sure that he's facing a lot of internal opposition, there would likely be outraged resignations over it, but the facts are clear and would vindicate him. He doesn't have to go all out like they did with AIDS, although it would be the moral thing to do, but he has provided zero leadership so far.

It's been 50 years without progress. A slow pace is not acceptable.

 

I don't think so. I think POTUS can add to it (not gonna happen here) but resolutions are a thing Congress can do on its own since they are not binding.

 

Interesting, so i assume that means what can be done is limited but they can buck the dotard.

If we are determined to protect him we can. I assume thats supposed to get us something somehow.

 

If it passes both houses it would most likely be a "concurrent resolution."

If so, a concurrent resolution would not have the force of law - but it seems like it might carry some weight during budget appropriations, as the resolution says "recognize and affirm the commitment of the United States to support research and medical education and promote awareness among health professionals and the public." In other words, it sort of establishes a basis, or finding, upon which direction could be given to the NIH to make more room in its budget for ME/CFS. It probably also makes it harder for Congress to support a budget that actually decreases funding for ME/CFS, since Congress has "affirmed" a commitment to support such research.

 

I can't decide. Collins doesn't want to move funding from other diseases and that's a rational decision. (I didn't say fair, note. I said rational. If life were fair, it would be allocated already so that we had a fair piece, but didn't have to reduce anything to get there.)

Collins makes a report to Congress periodically and says what's needed. He could say there's a dramatic need for ME, just like he does when there's other public health emergencies. He could beg for funding. As far as I know, he doesn't.

Congress is now asking for reports for NIH. The language replied is protective of NIH, rather than advancing the interests of pwME. Always "NIH is doing x,y,z [insufficient things, things they did a couple years ago and not currently working on, things that will move us forward but very slowly, etc.]" to imply great progress is being made and Congress should not need to worry or do anything extra.

I think NIH has some pools of money to spend at their discretion. NIH could decide to spend money on ME. They don't. Of course, there's always other stuff to do. But if something were different (not sure what exactly as I am not Collins), I think he could find a little for us.

That Congress is needed I agree with, for whatever reason.

 

correct.

Nothing happens next as far as the specific resolution. The point of it is to get officials involved and knowing what the disease actually is, that it's underfunded and patients aren't doing well, etc.

So that when a funding bill comes, or a bill to restore CFSAC, etc. they will know what's going on and be motivated to vote for something that will make a practical difference.

 

I believe so. If you are in the US, probably the simplest way is to volunteer with ME Action USA. It looks like they were working on it with Solve, and I am not sure who else.

 

Interesting, thanks

 

Resolutions are basically aspirational. Doesn't mean they're useless or toothless, but acting on them is optional. However any lack of action can be additionally criticized as ignoring the will of the legislature. In this it's mostly that they leave the specifics to the professionals in charge because politicians don't have the expertise to do it, which is how it should be done.

So it's not really limiting, in fact it gives the professionals tasked with doing something the liberty to implement in the best way they see fit. The downside is it does not give specific funding for it but the NIH was recently granted, what, about $2B in extra funding, so now the ball is entirely in NIH's camp. Collins asked that Congress force his hand, well, there it is.

Or once the full congress adopts the resolution anyway. The main obstacle to that is that they're kind of busy trying to prevent the whole system from crumbling...

 

The NIH budget was substantially increased recently, about $2B. No need to move anything so it can't be used as an excuse. Legislatures focus on what, not on how it's implemented. NIH doesn't need to be told how much to spend and on what, they have a lot of liberty in execution.

 

Interesting. So its perhaps more correct to say its a symbolic gesture that can be used to justify positive change

Interesting. I expect the NIH to now give us commensurate funding compared to other diseases of similar prevalence. When pigs fly...