About leading researchers being turned down by NIH - the facts?

[Kati]

Not even the those who take a psychosomatic view of ME/CFS are saying the disease is not real. They are just saying it is maintained by psychological rather than biological factors; ie, saying it is "all in the mind".

I don't think it is unique to have grant applications thwarted because those on the applications board have a vastly different viewpoints. I communicated a while ago with a researcher from a group studying herpes simplex virus etiologies for Alzheimer's. This group get all their grant applications rejected because none of the other Alzheimer's researchers accept the idea that a subset of Alzheimer's might have a viral cause. I felt very frustrated on their behalf, because I think infectious causes of chronic disease are under-researched.

I agree with that @Hip. I don't think physicians would deny the presence of infectious onset, especially in presence of labs which prove it.

However when the patient doesn't recover, then they will start lookimg at psychological factors which apparently perpetuates the symptoms and the illness. It's really twisted. Who would actually think of faking an illness that interrupts their lives, their work, everything, and 'playing' being sick.

Then there is blaming. And suggesting all kinds of stuff. Maybe you have to meditate. Maybe you have to eat better. Maybe you have to exercise even if your body is telling you not.

There has to be research on physician behaviors towards diseases they can't understand. I would suggest there is a consistent pattern happening.

 

[beaker]

Betsy Keller? in Itahca, NY you referring to?

GG

Yes thanks. I was close ? As the brain turns.

 

[barbc56]

A clear sign that the committee needs to decide whether this is a biological or mental illness and reorganize itself accordingly

I thought the emphasis was me/cfs as being biological.

At least in the states, the psychiatric community is starting to recognize this. Relatively speaking to what the UK experiences. Still not enough but sometimes it's baby steps.

I think things may be slowly turning around. Others may disagree, but I was fairly impressed with the IOM report.

Barb

 

[Anne]

Nobody was ever 'used to having applications approved'.

Great point, thank you. I'll change that!

The only reason to approve a grant is if it is well designed. There may be lack of interest in ME research in government funding bodies but I doubt one can improve the situation by shouting 'foul play'. What I think may be much more useful is to put pressure on ME physicians to put in good project applications based on carefully gathered preliminary data.

But surely top-notch researchers like Lipkin and Ron Davis are likely to submit well designed grants? And surely the abnormalities found in 2-day CPET tests in ME/CFS (Snell/Stevens/VanNess and Keller) are good leads which would merit further funding?

I think there's definitely some 'foul play' going on, and not just with ME/CFS: There's a pretty clear pattern in the diseases at the very bottom of the NIH's list of yearly funding: ME/CFS, fibromyalgia, interstitial cystitis, endometriosis - all diseases which primarily affect women and cause a lot of suffering and disability but aren't fatal. These are underprioritized illnesses in medicine all around the world. I don't think it is simply a matter of the researchers interested in these diseases not designing studies well enough - there's a system error here.

So I'm thinking that needs to be pointed out to be changed!

Another system error which I'm astounded doesn't seem to be debated in the medical world, is the tendency to call everything that isn't known psychological. So many mistakes have been done along this line, yet this pattern doesn't seem to be discussed. I think this is a part of what has been hindering ME/CFS research as well, and it would be another system error which would need to be addressed if medicine/science is going to respond adequately to current and future challenges.

Don't you think?

 

[Seanko]

And encourage ME charities to fund those crucial preliminary data gathering exercises.

Very true. In the case of Prof Julia Newton & MRC funding at Newcastle University in Britain, the ME Association, Action for ME & ME Research UK provided grants for pilot studies and the MRC subsequently provided money for larger scale work.

One of the studies led to a front page story in the national papers: her work on blood pressure changes, the autonomic nervous system & the relationship with sub-groups to POTS.

http://www.telegraph.co.uk/news/sci...-one-third-of-patients-wrongly-diagnosed.html
(NB: take some of the reporting with the usual pinch of salt)

The actual paper is available here
http://bmjopen.bmj.com/content/4/6/e004127.full

 

[Nielk]

Whether ME is considered biological or psychological in the mind of the reviewer should not weigh on their action of approval r disapproval.

A nice chunk of NIH funding goes to psychological or psychiatric illnesses like depression, schizophrenia and more. It is not up to the reviewer to determine that. The results of the study in question will bring light to that question.

I think the problem is that some reviewers believe that ME/CFS does not exist! Therefore spending money on researching it is a waste.

A reviewer for a specific disease who doesn't believe that the disease exists, should be removed from their post. Is there no one who oversees the work of these reviewers? Where are the supervisors?

 

[Aurator]

I don't think it is unique to have grant applications thwarted because those on the applications board have a vastly different viewpoints.

I'm sure you're right.

Not even the those who take a psychosomatic view of ME/CFS are saying the disease is not real. They are just saying it is maintained by psychological rather than biological factors; ie, saying it is "all in the mind".

Right, but that instantly places it in a different category of reality, where the symptoms patients describe are real in the limited sense that they are figments of a disordered imagination rather than real in the fuller sense of being physical manifestations of a physiological disorder. When greeneagledown said "Very few physiological diseases have to try to get grant applications through reviewers who don't believe the disease is real", I'd imagine he meant very few physiological diseases have to try to get grant applications through reviewers who believe the disease (or rather its symptoms) is a figment of the patients' imaginations rather than a genuinely physiological disease. I think it's crucial to distinguish these two different orders of "reality" in disease, not least because the psychiatric lobby rely heavily and disingenuously on a rather too convenient blurring of the distinction between the two.

 

[user9876]

I think the problem is that some reviewers believe that ME/CFS does not exist! Therefore spending money on researching it is a waste.

A reviewer for a specific disease who doesn't believe that the disease exists, should be removed from their post. Is there no one who oversees the work of these reviewers? Where are the supervisors?

I wonder if one problem is that ME doesn't have a home specialty and so when grant proposals are reviewed you get a wide range of reviewers who claim some expertise. Grant reviewers aren't known for there risk taking attitudes in that they tend to fund the latest fashion within their subject or conventional ideas rather than those that challenge orthodoxy. But when there is no real orthodoxy or convention to pull on and reviewers are from different subjects some with quite opinionated and unforgiving views then maybe getting a proposal through the system is going to be even harder.

Rather than just saying the review system is corrupt. I think we should be asking for a review of the review system and for the NIH to look at why there are not many accepted proposals and then come up with an action plan both to ensure that sufficient high quality proposals are generated and get through the review process.

 

[barbc56]

I think the problem is that some reviewers believe that ME/CFS does not exist! Therefore spending money on researching it is a waste

Is there no one who oversees the work of these reviewers? Where are the supervisors?

I wonder if one problem is that ME doesn't have a home specialty and so when grant proposals are reviewed you get a wide range of reviewers who claim some expertise

review of the review system and for the NIH to look at why there are not many accepted proposals and then come up with an action plan both to ensure that sufficient high quality proposals are generated and get through the review process

Very good points and doing these plus others that haven't been listed might be a starting point for advocacy.

It's fairly obvious that goals that are more feasible, should be at the top of the list. But prioritizing them might be more difficult and some goals may have equal weight.

I don't believe there is any grand conspiracy but many factors that contribute to the state of research as it is now. These factors can be difficult to sort out.

Things do seem to be turning around relatively speaking. Unfortunately, these changes come about slowly.

Nothing wrong with lamenting the past as long as we don't get stuck there. The past is beyond our control. But we do have control over using past events to gain insight as to what happened and how to avoid the mistakes as well as realizing what worked.

I do want to look at the review process in more detail. If others chime in it would be helpful.

All this is easier said than done as well as time consuming.

Barb

ETA I tried to space the quotes for easier reading but it may still be a bit of visual overload. Maybe I should have just cited who wrote the posts but tbh, I need to do that later. I'm sure that there are other posts equally important but these are ones that stood out from reading today.

 

[Strawberry]

Susan G. Komen died of breast cancer, and her grieving daughter created a very successful breast cancer research fundraising and advocacy program..

Can't this be modeled somehow? Isn't there a parent or a sibling or a child of someone that has died from ME/CFS that could spearhead this with congress? Why is there the pity that we can't fend for ourselves because we are too sick and exhausted? It is true, but there are relatives of the sick that could easily advocate...

 

[Anne]

Jennifer Spotila has written about this chicken-and-egg situation (NIH saying they need more applications, but ME/CFS researchers reporting being turned down when they do apply) several times on her great blog Occupy CFS.

An excerpt:

Chicken, Meet Egg

As I said above, Dr. Maier presented data on the approval rates for CFS applications to NIH. In light of that data, Dr. Gailen Marshall asked the committee why they thought NIH funding was so low. The high approval rate suggests that the problem is not NIH’s willingness to spend money but that there are few applications coming in. Dr. Mary Ann Fletcher spoke frankly about the perception in the research community that it is extremely difficult to get funding. She cited an unnamed researcher who left the field because of it, and pointed out that Dr. Nancy Klimas is quite successful in her applications for HIV and Gulf War Illness funding but not CFS. Eileen Holderman pointed out that the illness name, and particularly CDC’s definition and use of the name, dilutes our disease into simple chronic fatigue. This discussion tied in nicely with public comment by Matthew Lazell-Fairman and others that the decades of neglect and active denigration of the disease by CDC and other federal policy makers has created the climate where researchers believe they will not get funding. This circular discussion recurs at every single CFSAC meeting, but this time it led to the recommendation of creating a CFS study section at NIH.

http://www.occupycfs.com/2012/10/06/another-cfsac-done-gone/

And it seems Cort Johnson and I have been thinking along the very same lines, see his two latest blogs:

http://www.cortjohnson.org/blog/201...igue-syndrome-and-fibromyalgia-lousy-funding/

http://www.cortjohnson.org/blog/2015/07/29/nih-blindspot-reason-mecfs-fibromyalgia-poor-funding/

 

[Anne]

Here's a comment from Cort:

"I was thinking about the complexity issue. These diseases are complex – they seem to affect a number of different parts of the body but I realized that most diseases are probably pretty complex and besides both migraine and fibromyalgia do have a central focus – the brain.

So I’m not buying the “these disorders are too complex for the NIH to deal with” argument anymore. If the NIH felt these diseases were serious enough the complexity wouldn’t be an issue – it would just be something to deal with.

The same is true with no biomarker/few consistent results problem. Again – once you decide you’re going to work on something- it’s just a problem – a solveable problem – that researchers deal with all the time.

The “problem” is the lack of commitment on the NIH’s end. If they have the commitment they’ll deal with it. They deal with the worst diseases on the planet - they can handle ME/CFS and FM."

http://www.cortjohnson.org/blog/201...cfs-fibromyalgia-poor-funding/#comment-672721