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"Plunging Grant Application Rates Test NIH’s Commitment to Chronic Fatigue Syndrome (ME/CFS)"
- Thread starter Tom Kindlon
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Alvin
Senior Member (Voting Rights)
You want to know what I know? PM me.Tom Kindlon
Senior Member (Voting Rights)
Okay, maybe I should have worded that better.
Reading between the lines I think a lot of people think this or something close to it and it is not explicitly challenged.
I recall one person in this forum saying something to the effect that why would they ever fund ME research, basically that it was governments' job to fund all the research. I think a lot of people see it like healthcare, where in most developed countries outside the US there is universal healthcare, where it is the governments' responsibility to fund healthcare. When people complain there is a lack of research in the field, they complain about governments: very few people complain that not much has been raised privately.
Alvin
Senior Member (Voting Rights)
That person didn't know what they were talking about. Sometimes individual people can inspire big picture answers, sometimes they are just sand traps.
I don't care if research money comes form private or public, just that we need all that we can get.
We are a harder group to get money out of, most of us are poor or beyond poor in cash and ability to lobby. Feel free to still try but the NIH is still screwing us and intend to continue until we can force them to do otherwise.
27 plaintiffs.
Yes, or because they are so siloed, particular departments/disciplines.
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@Alvin - I don't know who the community would sue - but governments have neglected pwME for decades.
@Tom Kindlon - I totally agree, with such a huge community and spouses/families effected, it's puzzling why fund raising is so low.
Canada has "universal health care".
However pwME often don't receive any type of treatment for their ME. They may also have trouble getting treatment for other conditions due to stigma - disbelief, and assumptions that pwME imagine all conditions.
@Tom Kindlon - I totally agree, with such a huge community and spouses/families effected, it's puzzling why fund raising is so low.
Canada has "universal health care".
However pwME often don't receive any type of treatment for their ME. They may also have trouble getting treatment for other conditions due to stigma - disbelief, and assumptions that pwME imagine all conditions.
Alvin
Senior Member (Voting Rights)
One could in theory make it a charter lawsuit.
The legal costs and length of such a lawsuit not to mention how much it would make the patients involved worse is not going to be pretty.
And victory will come down to luck, it would be very precedent setting in either a good or bad way depending on how it turns out.
There is not much treatment available, though educating all doctors in diagnosing ME and standardized set of tests to rule out other diseases would be good moves.
Also setting guidelines for considering patients disabled and eligible for disability benefits would be very helpful, it may not be medical treatment but it would help countless numbers.
@Alvin - there are treatments noted in the case definitions: the Canadian Consensus Criteria; the IACFSME manual; and probably in the ME-ICC - no energy to access it right now. Of course, these are all separate treatments for separate categories of symptoms; e.g. drugs used for OI, migraines, nausea etc.
As we know, there are no treatments as of yet, specifically geared to ME.
As we know, there are no treatments as of yet, specifically geared to ME.
@Alvin - I agree, a Charter lawsuit. All Canadians are supposed to have access to health care - due to lack of medical education about ME, little to no funding, and no specific drug for ME, our community receives very limited assistance from health professions. And, we are abundantly aware of the abuse and mistreatment meted out to pwME by some in health professions.
Alvin
Senior Member (Voting Rights)
Things like painkillers and antidepressants and so forth would likely be prescribed by most docs if requested. Of course some have bad docs but that applies to any condition.
Having specialists in ME for patients to visit would be nice, but the legal system is not exactly involved here.
It would be very hard to argue that research money is required under the charter, it may win but its a very long shot.
As for medical care its not going to be easy to manage that either since its just too abstract but its possible.
Medical care is more about changing guidelines and not the legal system.
This is very different, abuse and mistreatment would be an individual not systemic lawsuit, if some were locked up against their will they could sue for malpractice and could win but thats not going to lead to research money.
As for disability benefits i'm not sure how to go about that, its hard to imagine the legal system would be the first avenue to explore.
Inara
Senior Member (Voting Rights)
With money.
If money is around, anything goes.
(That's not very specific I know... For every country, the legal frame is different. Often, only individual cases can come before court, so we'd need many pwME that go the legal way. Plus, before the international courts can be called, the national legal possibilities need to be exhausted.)
Inara
Senior Member (Voting Rights)
This is fascinating. Where is the process, in which country?
I was told, in Germany there is no legal way re. guidelines. But maybe I asked the wrong person. I remain unconvinced it's impossible.
It all gets back to money. Where to get it? I am struggling financially, and I highly doubt a fundraising compaign will be successful.
Inara
Senior Member (Voting Rights)
You need to go the national way first. I think this may be via the criminal law. Countries can be sued, but I don't know the specifics. (I'm trying to get more info on this.)
After the national way come the international possibilities, like the International Criminal Court. But the ICC only applies to individuals I guess, not countries. As a legal frame, there is the international criminal law, the Roman Statute, the UN human rights charters, including the right to health.
I'm saying literally neither of those things.
ME/CFS Skeptic
Senior Member (Voting Rights)
Thanks for sharing your perspective @Tom Kindlon . I always learn a lot from what you say.
I think it also depends in which country you're at. In places like France or Germany, it might be best to focus on awareness of ME/CFS because there is virtually none. With more awareness perhaps some universities would devote a position and resources to it, and that could be enough to get some basic research going.
In countries like the US and the UK on the other hand, it might be best to focus on raising funds to draw new researchers into the field.
I think it also depends in which country you're at. In places like France or Germany, it might be best to focus on awareness of ME/CFS because there is virtually none. With more awareness perhaps some universities would devote a position and resources to it, and that could be enough to get some basic research going.
In countries like the US and the UK on the other hand, it might be best to focus on raising funds to draw new researchers into the field.
It's happening in Houston, Texas. Let me see if I can conjure a link to a good article or two describing it. This author was nominated for a Pulitzer for her investigatory research into Lyme.
https://www.huffingtonpost.com/entr...ts-of-lyme-policy_us_5a2764bbe4b0650db4d40bb5
https://www.lymedisease.org/idsa-lawsuit-pfeiffer/
Edit to add: One thing to keep in mind here is this is pretty much a case of 27 or so little Davids against several Goliaths, including a few Insurance Carriers. Its about conspiring against patients and doctors. It would be theoretically comparable to a group of ME/CFS patients suing BPSers and I suppose the UK government for conspiring to make it difficult for pwME to get proper treatment or disability benefits.
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Inara
Senior Member (Voting Rights)
I would like to do exactly this. But without money no way. And class action lawsuits are not possible here.
Inara
Senior Member (Voting Rights)
This is so awesome.
Alvin
Senior Member (Voting Rights)
Thats a necessary piece but just money is not enough
For a legal challenge to win we need a good argument that makes sense to the judge or jury (if applicable)
Excellent evidence (some money involved)
Amazing lawyers (big money often necessary)
In theory a trial is about finding the truth, in actuality it represents the values of the times its held in, how good the evidence is, the prevailing mood/ideology if you will and how convincing the lawyers are and how good they are at inventing and presenting their angles.
In other threads i have argued that we may need to turn to the courts to defeat PACE but timing and evidence is critical. If there was a huge lawsuit a couple years later it would have failed spectacularly. The "evidence" seemed rock solid. Now that we have the data and reanalysis we would likely do better. But i think we should wait until we have a biomarker or better yet a treatment, go to trial with that and we have a rock solid case with an outcome, they lied, they committed fraud and despite that we have the evidence in numbers and the biomarker hard fought and damn near impossible to deny. Then we should win big.
But thats also the thing, a trial is a risk, what if we lose despite being correct. If an appeal does not go our way then we have a precedent setting ruling against us, even though we are right. That would be worse then not having gone to the courts at all. Thats why we have to be uber strategic.
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