"Plunging Grant Application Rates Test NIH’s Commitment to Chronic Fatigue Syndrome (ME/CFS)"

Alvin said:
i have weird cognitive issues, i can reply to this thread all day, i can't even edit an article i wrote with some changes that need doing. The working memory is shot. I also can't do simple things like research on google or read books or flyers without blanking out. My to do list grows while i fall further behind on things i need to do that are not hard for normal people from getting my affairs in order to coordinating simple things like making phone calls or getting warranty service on my defective monitor. And oddly enough in a day or two i won't be able to respond to this thread easily though a new thread i can manage for a while again. I can't cognitively come back to things and pick up where i left off. Don't ask me to explain how or why, i simply can't explain it.
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Wow. I can relate to so much of this. My existence used to be synthesising massive numbers of things into an overarching vision, insight or strategy in my head. Lateral thinking writ large. Putting things down in a communicable form was onerous. Now that is a nightmare. And switching tasks, or even stopping tasks feels like physical pain. I feel your pain. Even my old mind mapping is not saving me in my new found housebound tasksless existence :(

I am not diagnosed as Asperger's/ASD, etc. But I have no illusions. Hypermobility is correlated with ASD I believe. And... Hypermobility is correlated to ME. Ok, correlation is a dangerous oversimplifying word, but a solid Venn overlap of increased probability comorbidities.

I don't want to take over this important thread. Is there any way I can turn this post into a new thread? Or is that admin only?

I'd love to see if others have battle-hardened cognitive strategies or views.

Moderator note: this reply has been copied to a new thread discussing coping strategies for cognitive difficulties here
https://www.s4me.info/threads/strategies-for-coping-with-cognitive-difficulties.8730/
 
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Tom Kindlon said:
I think a strategy that tells people it's all one big conspiracy and the *only* reason we don't have hundred of millions of dollars of funding each year is because of bias in grant making bodies is not an optimum strategy. I think to get hundreds of millions of dollars of funding per year, we will need to raise more privately but there doesn't seem to be much focus on raising money privately for research. There will for example be lots of millions missing protests this May, but how many fundraising events for research will there be (outside the UK)? I am, of course, grateful for the people who do the protests, I just think some of that energy, particularly of healthy people, could be harnessed for fundraising either at that time or another time.
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This.

Cancer research seems to a prime example of private charitable research organizations successfully seeding and building momentum, which larger grants can then ride.
 
Michiel Tack said:
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.
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This. Extremely important.

Advocacy, £$€¥ logistics, legal processes and governmental mechanisms differ widely.

Needs people on the ground. Some places will end up depending on or being driven be examples in bell-weather countries. Some countries will be easier meat than others.
 
I am no longer 'in the law', but can share a few things regarding legal process so we can keep perspective about what's feasible, and how, in nearly every country. Otherwise, people can understandably get too passionatly idealistic about what is moral, as opposed to what's possible. And things are possible.

I should also add I'm fried and lost the plot details about why legal action is even being referred to tbh.

  • Plaintiff
  • You need people who actually have the right ("standing'") to lodge a case.
  • Class actions in the US are vaguely possible in the UK under Group Litigation mechanisms
  • Defendant
    • You need someone/thing to sue that is sue'able, in both fact and law.
    • Some legal systems will either literally or practically make some defendants unsuable e.g. on 'public policy's grounds.
  • Tribunal with jurisdiction
    • There must be a court or other judicial body with jurisdiction.
    • Intergovernmental treaty based law is more complex and supranational (unless incorporated into domestic law). It will often be domestically irrelevant in terms of applicable law, except as ammo.
    • ECHR is a good example. Before the European Convention of Human Rights was integrated into UK law, the European Court of Human Rights was a body of UK creation after WWII and UK government were signatories (countering Soviet ideas). But, our courts and government ignored it constantly, so we held unenviable status as constant human rights violators compared to our peers. UK government lost cases constantly. Incorporating the Convention into UK law via the Human Rights Act 1998 meant the ECHR could be depended upon in domestic courts first, before an issue became that bad/inaccessible/expensive. No comment about people who now want to abolish the Human Rights Act.
    • I don't see the mentioned International Criminal Court as relevant, unless I brain-hiccuped and ICC criteria was being referred to.
  • An actual legal case, based on points of law
    • Basically, what's your problem, what's your case, what is the legal issue. Must be more than a point of principle or being annoyed.
    • Usually the plaintiff must have pursued all preceding relevant recourse, or you have no case. You can't just sue a company after refusing to attempt all reasonable/relevant corporate, regulatory and/or industry complaint mechanisms first.
    • Civil vs criminal. Not everything is criminal, and criminal convictions require a much higher burden of proof i.e. more difficult to win / not easy meat. Why? Deprivation of liberty/prison is serious....
 
Alvin said:
We might as well accept this disease will never be treated in our lifetime because we accept failure by playing by rules designed for failure.
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This is about as close to a summary of how I feel about the community's willingness to accept bad faith arguments over the years as any i've ever seen. NIH and CDC have played a tremendous role in shaping the lack of research and treatments and disgusting state of clinical care and patient support. Accepting these half-baked responses about lack of grant applications is failing to see the forest from the trees.
 
Corporate funding plays a huge role in certain scientific research. This depends on the profit motive, a business opportunity. I believe LDN research is relatively sparse because naltrexone is generic'able. No-one cares enough to throw big money. That's what the LDN Trust say.

Is this a sufficiently relevant observation to ME? Is this relevant to and been surmounted by other ilnesses? I'm wondering where we can find portable best practice. I'm limited to questioning, due to my ignorance.

@Tom Kindlon @Jonathan Edwards
 
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InfiniteRubix said:
I don't see the mentioned International Criminal Court as relevant, unless I brain-hiccuped and ICC criteria was being referred to.
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I referred to the Roman Statute.

The facts are out there. And yes, they need to be collected and properly presented as evidence.

Edit: But to be clear - inside the legal frame, the ICC cannot be the first step.
 
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InfiniteRubix said:
Corporate funding plays a huge role in certain scientific research. This depends on the profit motive, a business opportunity. I believe LDN research is relatively sparse because naltrexone is generic'able. No-one cares enough to throw big money. That's what the LDN Trust say.

Is this a sufficiently relevant observation to ME? Is this relevant to and been surmounted by other ilnesses? I'm wondering where we can find portable best practice. I'm limited to questioning, due to my ignorance.

@Tom Kindlon @Jonathan Edwards
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It is difficult to get corporate, or any, funding until you have a good scientific lead. The key problem for ME is the absence of the sort of lead that will convince funders of any sort. At the moment we have speculations like it might be viruses or bacteria or mitochondria but nothing really fits together in a way that one could call a lead. Brain imaging might provide the lead, or MR spectroscopy during PEM, or whatever but so far it is not there. That is why applications are considered not up to standard and not funded.

Government organisations are beginning to see that programmes need setting up that might generate leads now - both in the US and the UK I think and maybe Australia too. But you have to have scientists with a broad enough expertise base to run that sort of programme. It is no good hiring people with tunnel vision on one aspect.
 
Mfairma said:
This is about as close to a summary of how I feel about the community's willingness to accept bad faith arguments over the years as any i've ever seen. NIH and CDC have played a tremendous role in shaping the lack of research and treatments and disgusting state of clinical care and patient support. Accepting these half-baked responses about lack of grant applications is failing to see the forest from the trees.
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It's difficult (and disheartening) for those new to the scene to understand how much of what goes on in agencies like CDC and NIH are repeats of what's been going on for countless years.
NIH needs to innovate when it comes to ME. We don't fit neatly (or messily) into their categories and their grant structure ----- so they need to find ways to accommodate us. They need to come up with new ways that really fund solid research for appropriate lengths of time, etc. Invest in us as though they were investing in revolutionary science and patient care.
 
I think this is better here:

InfiniteRubix said:
It is wonderful :)

The amazingly shocking thing is that it is NIH, i.e US, funded. And yet our 'under the influence' ministerial response to the last HoC debate refered to a lack of quality research applications. There is, of course, a difference between applying for MRC funding for a paper and for a going concern, such as a biobank i.e. I don't know who the state funding bodies in Whitehall, Edinburgh, Cardiff, Belfast would be.
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InfiniteRubix said:
My apologies. I had intended to make the point that this is ammunition to throw back in the face of the government department and ministers themselves. this is because they rightly delegate via primary and secondary legislation, but they do retain overall authority and practical influence. In the case of the biobank, it seems to me that there is a question to be answered.

Who is it who continues our contact with the department?
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I've heard of multiple studies / PhDs about ME/CFS that have been going under the radar. Being able to benefit from the exponential growth of new knowledge and technology in the field of Medicine is definitely benefiting us. Things are definitely looking brighter.
 
Londinium said:
I'm saying literally neither of those things.
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I disagree

InfiniteRubix said:
I am no longer 'in the law', but can share a few things regarding legal process so we can keep perspective about what's feasible, and how, in nearly every country. Otherwise, people can understandably get too passionatly idealistic about what is moral, as opposed to what's possible. And things are possible.
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Cool, i didn't know you were a lawyer.
If i might ask what do you think of the posts i have made in the last few pages about ME and the legal route?

Mfairma said:
This is about as close to a summary of how I feel about the community's willingness to accept bad faith arguments over the years as any i've ever seen. NIH and CDC have played a tremendous role in shaping the lack of research and treatments and disgusting state of clinical care and patient support. Accepting these half-baked responses about lack of grant applications is failing to see the forest from the trees.
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Thanks
Its common in politics and people fall for it over and over and over again, easy answers, un(dis)provable but laughable nonsense, defeatist explanations about why things can't be done which few want to challenge and divide and conquer arguments or conditions that are impossible to surmount.
Its all designed to prevent progress.

InfiniteRubix said:
Corporate funding plays a huge role in certain scientific research. This depends on the profit motive, a business opportunity. I believe LDN research is relatively sparse because naltrexone is generic'able. No-one cares enough to throw big money. That's what the LDN Trust say.
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I'm sure here is some truth to this but i think its more complicated. Interestingly with LDN there are no studies that show it useful in ME but a fair number of researchers seem to use it in their practices off label and apparently find for some it works quite well. To them it works fine so they don't need to do research to prove that but others are not going to use something they have no data on.

Denise said:
It's difficult (and disheartening) for those new to the scene to understand how much of what goes on in agencies like CDC and NIH are repeats of what's been going on for countless years.
NIH needs to innovate when it comes to ME. We don't fit neatly (or messily) into their categories and their grant structure ----- so they need to find ways to accommodate us. They need to come up with new ways that really fund solid research for appropriate lengths of time, etc. Invest in us as though they were investing in revolutionary science and patient care.
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To a point i agree, we are basically at the beginning of mainstream acceptance and money. Hence they don't have many people with track records to pick from. But every other disease was here and they got to where they are now so its not like we have some novel disease that can't be funded because its too different. The main difference is we were treated as fakers for generations so we are so far behind in recognition and research.
 
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Alvin said:
I doubt MS was taken seriously because they fundraised privately, they were taken seriously because modern medicine could see the damage in MRI/CT scans.
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I believe it also took some kind of congressional action, but I haven’t yet found the documentation for this.
 
Tom Kindlon said:
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.
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I would tend to blame the government for both the lack of government funding and the lack of private funding because of the government-sponsored message that CBT/GET treats ME, that it’s trivial fatigue, no answers after a robust search, etc. It makes research look unnecessary and the disease look unimportant, so harder to show the worthiness to private foundations. Edit: and private individuals. /edit.

Also, the government has a specific responsibility to make sure people are getting reasonable care. Ford Foundation, Bill and Melinda Gates Foundation, Rotary Club, Buffet Foundation, and so on, don’t have that specific responsibility. Although they certainly would have the power to help.

In the end I will always blame HHS until they get things right and we are managed like any other a well-managed disease properly in some particular Institute and with equitable and stable funding.
 
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InfiniteRubix said:
I think this is better here:
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Did the fact that the UK based biobank depended on the US NIH cause discussion or potential action?

It is of huge practical example for advocacy purposes in the UK, IMO (which also helps raise standards everywhere). The 'shaming' opportunity should be used and repeated ad infinitum @EspeMor

(Quoted post Yesterday at 9:27 PM has quoted posts in it you have to scroll back to find)
 
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Alvin said:
Cool, i didn't know you were a lawyer.
If i might ask what do you think of the posts i have made in the last few pages about ME and the legal route?
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I am not a lawyer exactly. My background is peculiar... I'll summarise me better another time.

Sorry, I struggled to understand exactly, with how I'm feeling :( There were lots of posts flying around on it. Can you try to type/copy under the bullets I gave, as a legal case template? Easier to discuss then, maybe in another thread.
 
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