Discussion in 'General ME/CFS News' started by Sasha, Aug 20, 2015.
Be sure to read Dr Davis's responses to the specific reasons for rejection.
So basically the NIH comes up with bad excuses to justify rejecting perfectly fine research proposals for ME/CFS.
NINDS definitely come out of this looking like they got out of the wrong side of the bed.
They awarded $320K to the Klimas study which is using Peripheral Blood Mononuclear Cells. The first reason for their refusal doesn't seem to stand up to scrutiny unless the award to Klimas was an aberration.
Does anyone get the impression that NINDS are somehow offended by the size of the request, that they think it's a bit cheeky? Or is it just me?
Edited: which is kind of backed up by reason 2.
There is definitely a weird vibe in there.
They are essentially saying, "perhaps your proposal would have more success if it were cheaper. By a lot."
Yes. Same with the Lipkin study - initial application was large and subsequently rejected. Latest application was smaller and was approved.
The problem seems to be lack of (total available) funding. They are just giving lots of excuses because they are afraid of blowing their budget on what they deem to be unimportant.
Perhaps real solution is to create an entirely new (NIH) institute, 'emerging diseases' or some such, to focus on rare and emerging diseases, to foster a broader approach than would be delivered with the rigid segmentation of existing institutes (eg neurology, infectious diseases etc).
Some diseases are favored and well funded, others are neglected. There are clear discrepancies. They could provide reasonable funding for ME/CFS if they wanted to. Does AIDS really need 3 billion a year?
Dr Davis suggests that in this video.
Once official at the CFSAC meeting that just finished, Vicky Whittemore, mentioned that they have special funds available for special circumstances. She mentioned they did something for epilepsy and called it Eureka and thought something like that could be done for ME.
First I think we've ever heard of such a program.
"“The goal of the EUREKA program is to provide a means to test high-risk ideas to see if they are worth pursuing further. These kinds of ideas often come from left field and are very creative. Since they are so unique, however, there may not be any existing preliminary data to support the hypothesis or demonstrate feasibility. EUREKA grants provide an opportunity to gather this information,” said Brandy Fureman, Ph.D., program director at NINDS."
Here's one link to a Eureka project for Epilepsy and some quotes from the page.
"This research was funded by the Exceptional, Unconventional Research Enabling Knowledge Acceleration (EUREKA) program at NIH that supports innovative research with the potential for big impact in biomedical science."
"The goal of the EUREKA program is to provide a means to test high-risk ideas to see if they are worth pursuing further. These kinds of ideas often come from left field and are very creative. Since they are so unique, however, there may not be any existing preliminary data to support the hypothesis or demonstrate feasibility. EUREKA grants provide an opportunity to gather this information,” said Brandy Fureman, Ph.D., program director at NINDS.
Looks like we posted at the same time Denise
And then has the gall to claim that they aren't getting any "quality" proposals. Just what, may I ask, qualifies as a "quality" research proposal for ME/CFS?
To put the best possible spin on this, the left hand is completely clueless about what the right hand is doing -- abysmal management. To put the worst possible spin... well, we all know what that is.
There's a saying , something about "great minds...."
Look at the history as to why no appropriate funding is permitted people.
It really is obvious, and it will never change, ever, until independent researchers find the pathogen(s) away from major institutions who study tired people with Fukuda CFS (rebranded SEID), some who have burn out and recover by gentle exercise, others who are neurotic and avoid any activity and need reprogramming with CBT.
Yes, many with CFS, do have biological disease, but they all share the label of 'CFS' so the numbers are diluted in research studies. No consistency is possible. Any 'leads' are thus dropped, thus no treatment ever 'works' for CFS.
It's of no coincidence, that Ron Davis has his proposal rejected, he risks studying the actual people with single cause ME rather than a heterogeneous fatigue cohort with no infections (Lipkin studies are all negative!), when people with ME on this very forum are riddled with infections and find them all the time. Huh? Yes!
Re-run that by your mind again.. Lipkin can't find a thing in CFS, but people on this very forum have the same infections found in AIDS (Mycoplasma, HHV-6, CMV, EBV, Parvovirus, Borrelia/Babesia etc). That in itself should raise alarm bells, why patients with shared symptoms DO have chronic infections, and patients chosen by Fukuda CFS, clearly don't.
History of how research became blocked for ME via CFS:
As 'CFS' was in its blueprint stage, it appears an army psychiatrist from apparently sat on the panel with Fukuda to help create 'CFS' in an allied military country thousands of miles away. During this, we knowStephen Straus writes to Fukuda himself telling him they need CFS for political purposes rather than a ''failed viral hypothesis'', this all coming after various outbreaks of 'ME' in allied military countries with the same gene stock of northern hemisphere whites (UK, USA, Canada, Australia, NZ).
Via this, the rumor of 'CFS' being a disease of white neurotic women in BMW's (a variance on refrigerator moms for Autism) holds some clout with the public and other detractors who hold the money for research. Think of all the very severely affected people with ME you've seen in the newspaper, and online. Very rarely, are they not white. So a genetic component is obvious. To counteract this, the CDC pretend CFS is most common in ethnic minorities. They mean chronic fatigue and of course this is 'true', as to the CDC, ME doesn't exist and they aren't talking about Ramsay ME.
Divide and conquer: Fatigue based research cohorts, prevents 'serious' researchers getting appropriate funding for Ramsay ME:
It's not hard with a Trojan horse (Fatigue Syndrome of CFS replacing Neuro ME or Viral PVFS) to infiltrate the research structure of western governments, then divide and conquer via directing research in the wrong direction (biopsychosocial CFS theory - new age hysteria of exercise avoidance based on irrational 'fear') via studying heterogeneous cohorts with tiredness - hence the creation of Fukuda CFS in the first place, that did not require any neurological or infectious component - unlike ME and unlike PVFS, which 'CFS' replaced in the doctor's office.
BPS psychiatrists, in effect, 'steal' the funding from organic CFS and vastly exaggerate therapy effectiveness (CBT/GE being 'proven' and 'evidence based'). If CBT/GE is claimed to be effective, this also stops research into severely affected, because clueless people deem it a waste of money if a therapy actually works, so no need to do biomedical research.
It's easy to research people with probable ME if you use logic, rather than politics:
The severely affected can't reproduce as they're too disabled and they're blocked from giving blood and tissue since the late 80's in England anyway, whilst being told they need CBT and GE to snap out of functional somatic symptoms!
By doing nothing for severe ME, this way, there are few to no survivors to act as witnesses once this is over and the cause is proven:
Core question to ask yourself when thinking what has happened in 46 years of 'ME'?
What has actually happened in medical science progress (in terms of treatments since the 'ME' was officially recognized ?).
Next question to ask yourself.
If we know the CFS research criteria are utterly useless to separate chronic fatigue states, from classic Ramsay ME (OI, Mitochondria phenomena of delayed affect, Muscle Fasiculation etc), why did no one ever, including the IOM:
*Gather organic ME researchers around a table to decide upon the tragedy of 'CFS/ME' - IOM prevented this!
*Use far more strict criteria in people with classic ME symptoms (such as OI) and make it mandatory not optional.
*Study the severely affected as a research priority, not a research minority.
*Remove psychiatry from research funding due to their proven failed hypothesis and money wasting over decades.
*Demand government approval to increase research funding 100 fold by calling a public Internet streamed meeting and recognize tens of millions are now disabled and it's an urgent matter that must be researched immediately, large scale studies.
Everything could change if politics allowed:
All of this is do-able, it took massive inaction of AIDS and millions dead to stop the 'gay' association and give 'Gay Cancer' a name - AIDS. This could easily all happen with ME, tomorrow. It cannot due to who holds the money, and who is at the very top, because of this 'CFS' label and weak criteria to be a 'CFS'. No one takes it seriously and other reasons that are obvious.
With Lyme-like disease (not Lyme) now increasing at uncontrolled rates (also misdiagnosed as CFS), they need to avoid mass panic. With no effective treatment, no one wants to know you can catch a neuroinvasive disease, including in childhood (as I did). The best thing to do is manage the situation, to keep order, exactly what Stephen Straus did and why he was congratulated by Fauci for his great work towards CFS after his death (Straus actually helped destroyed ME via promoting CFS!).
Why does all this happen during the same period in history and the same players control the direction of research, e.g. oblivion, blocking, failures, mismanagement, and time wasting. Everything happens for a reason and highly intelligent people no exactly what they're doing.
'CFS' research is not attractive when it's based on fatigue, rather than a crippling neuroimmune disease:
You can be a brilliant biomedical researcher and waste your career away in CFS research with no grant money. This is precisely why no one is interested, because there is no money for large scale, multi centre studies, and no glamour in studying tired people. Unlike curing AIDS.
But there is money for other conditions that aren't as disabling as 'CFS', Much much more money. And thus we come around to the start of the circle, and start all over again.
Failure to change criteria by the CDC:
With Fukuda CFS criteria (CDC's Unger still wants it) or any other weak fatigue based criteria that requires no objective measures of disability (CDC's Unger rejects research demonstrating usefulness of 2-day CPET) - the severe CFS ME patients demise is guaranteed. Precisely what was agreed decades ago by Straus et al, until a treatment is available.
A treatment can't be made, until the research is done. How do you research what your allies allowed to spread uncontrolled? That'll look even worse.
More decades, more time wasting and adolescents with 'ME' have then died out or are in their 60's, 70's. Natural causes and all.... and when the pathogen is found, the culprits of political meddling are all dead and gone, and no one can be held responsible. No one looks bad who remains in charge, and that's how you mange a situation.
To recap, 46 years of ME being officially recognized has passed and we are still using useless research criteria, that doesn't even begin with people with proven neurological symptoms (such as autonomic dysfunction).
It'll be 10 years before the start of subsets of 'CFS' are robustly proven as biological, with follow up studies needing to be done after Fluge & Mella. That is 56 years since W.HO. 'ME'. If you got ME at age 20 in 1969, you'd likely be long dead, once ME is accepted.
Blaming people for their symptoms (who have disease and no mental health history) then becomes a potential criminal act, by people who killed a minority off. Human rights, were ignored.
There is never a good outcome to a public health tragedy of ME (CFS), purposefully maintained by researching people without proven signs of disease diagnosed by a doctor (Fukuda CFS criteria) when it is clear this criteria is dangerous to the patients with active signs of disease, such as neurological damage which is easily tested for with a TILT test.
A TILT test was rejected, of course, by all Government associated health bodies 'dealing' with CFS, including NICE in the UK. Disgraceful, but allowed, because no one cares if you're thought to be mentally ill and not infected.
What an absolute tragedy, and even worse, keeping Fukuda CFS is clearly done to waste time, until someone is brave enough to call and end to the enforced disability of people with unresearched, so untreatable autoimmune disease.
I'd be crying into my coffee too if I had my biomedical research grant applications denied, knowing that the reasons behind it are political and not sensible. People get all excited about 1.6 million bucks for 3 biomedical CFS researchers, but remember the UK funded 8 million dollars for 1 CFS psych study (PACE trial).
That's what your up against. Stupidity in science and professional stupid people deciding if patients are allowed research to help them or not.
The problem in my view is the stigma. No one wants to be caught funding a disease which is believed to be psychological.
If MERS or Ebola were to emerge in North America, believe me the funds would be poured into researching that disease. Millions would be made available with a snap of the fingers. Dr Lipkin does not have problems researching MERS or Ebola. And I bet many teams are looking at Post-Ebola sequelaes. No one even wonders if there are similarities between post-Ebola and ME.
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