Unfortunately, I am too sick to offer public comment by telephone for the August 18-19, 2015 meeting of the CFS Advisory Committee. I submitted these written comments for the record. Thank you to all of the advocates who are speaking by phone or in person.
When I was a kid, I used to go fishing with my Dad. It was nothing sophisticated: just a borrowed boat on a small lake, live bait and a plastic bobber on the line. But there was a hitch. There was no way I was going to squish a live worm onto a hook. And even though my father is a herpetologist, he did not insist that I learn to bait the hook myself. He baited my hook and we fished. My Dad also did not ask me the obvious question: was my fishing strategy going to consist of waiting in the boat and hoping the fish would come to me on their own?
Yet this is the kind of fishing strategy that seems to be NIH policy as far as ME/CFS is concerned.
For the last ten years, advocates, scientists and this Committee have urged NIH to invest more money in ME/CFS research. Both the IOM and P2P reports reached the obvious conclusion that substantially more research is needed in this area. The IOM committee said, “Remarkably little funding has been made available” to study this disease, and “More research is essential.” (IOM, p. 225) This advisory committee has urged greater investment, and has repeatedly recommended that NIH issue an RFA with dedicated funding in order to stimulate this field.
Last year, NIH’s response to this Committee was that issuing an RFA “would not be an effective strategy”. On August 11, 2014, Dr. Francis Collins wrote to Representative Zoe Lofgren, “The lack of sufficiently trained individuals applying for NIH research funds to conduct ME/CFS research projects contributes to the low number of applications received and subsequently the annual spending on ME/CFS research.” This is in and of itself a remarkable assertion, since researchers like Dr. Ian Lipkin and Dr. Ron Davis have applied for NIH funding and been rejected. Are they not sufficiently trained?
Every time NIH has been urged to issue an RFA to stimulate research in ME/CFS, NIH’s response has been that there are not enough researchers or data to make it worthwhile. In other words, NIH is sitting in the boat and expecting that the fish will catch themselves.
This is not NIH standard operating procedure when it comes to other areas of research:
- In 2007, NIH issued a $7 million RFA to establish the MAPP research network for chronic pelvic pain, reissuing the RFA with another $7 million in 2013.
- In 2010, NIH issued a program announcement for systematic epidemiologic, etiologic, or therapeutic studies on vulvodynia, stating, “The major focus of this FOA is on stimulating and strengthening a multidisciplinary approach to this complex, underresearched area of women’s reproductive health.” (emphasis added)
- At the opposite end of the spectrum is the BRAIN Initiative, in which NIH invested $127 million in 2014 and 2015 alone, for innovative technologies to produce a dynamic picture of the brain at the cellular and circuit level.
What these diverse initiatives share is an NIH investment policy designed to stimulate research in an area that needs development. But this policy is not applied to ME/CFS.
Worse, NIH’s current position on ME/CFS is not even consistent with its previous actions. In 2005, NIH issued an RFA on Neuroimmune Mechanisms and CFS. How could there have been enough known about the disease and enough qualified researchers to do the work sufficient to issue an RFA in 2005, but not now in 2015 when we have more data and more scientists than at any time in the history of the field?
Everyone – patients, advocates, researchers, members of Congress, the IACFS/ME, this Committee, the IOM and the P2P – EVERYONE has told NIH that more research is desperately needed in ME/CFS. EVERYONE has said that this is an under-researched area that needs an immediate infusion of money and personnel if patients are to have any hope at all for effective treatments. Everyone has said this, and NIH refuses to do what is necessary. Instead, NIH is sitting in the boat, waiting for the fish to come and fling themselves out of the water and into the boat on their own.
NIH knows how to encourage interest in under-researched fields. It declares an interest in the field, backed up with dedicated funding. In other words, simply bait the hook, and the fish will swarm the boat.
I say to NIH: Bait the hook. Go fishing. I know you will catch some keepers.
Thank you for submitting comment despite being so sick.
Here’s hoping that you get to baseline soon!
Thank you for the letter to the “Powers that be”. It was informative and lets them know that you, and all advocates are watching what they are doing “and NOT doing! Your voice is appreciated.
I cannot imagine a more perfectly worded statement. Your persevearance is a blessing. Thank you.
I second this comment.
Your attention to detail and perseverance while ill is much appreciated. Please keep up the pressure.
Thank you for your cogent and right-on remarks (as usual)!
“For the last ten years, advocates, scientists and this Committee have urged NIH to invest more money in ME/CFS research.”
Sadly much much longer than 10 years.
Thanks for you participation and continued advocation.
Hope you get back to a better level of this plague soon.
get well soon jennie! these troughs are never as interminable as we imagine them to be. & thanks for all your hard work and perseverance!
The comment was made by NIH ex-officio within last year, I think: (paraphrased) “I encourage the advocates to get more researchers to submit more grants.” They say the funding matches number of good grants submitted. More good grants, more funding. But I talked to a researcher who used to do CFS research. When asked to help get it going again at his university, he said he wasn’t interested. One of the reasons is very little research funding from NIH compared to other diseases. So the researchers believe grant applications will follow funding while NIH says funding follows grant applications.
While I don’t necessary believe the NIH response, for reasons you and examples you give in this blog, even if true, then NIH has a communications/public relations problem where researchers don’t understand NIH funding. It is not the responsibility of patient advocates to explain this to researchers. Only NIH can correct misperceptions of how diseases are funded. So it’s up to them to reach out to researchers to get them to make applications. And if the lack of applications is due to that misunderstanding, then the problem lies with them and their communications.
A public relations campaign to correct this problem is the way to fix this and is their responsibility. It is the responsibility of the one misunderstood to communicate what they do and how they work. Passing the buck because they are misunderstood is no excuse.
“The comment was made by NIH ex-officio within last year, I think: (paraphrased) “I encourage the advocates to get more researchers to submit more grants.””
I heard a similar message again today. Apparently it is our job to find researchers, set them up with facilities, and fund them with bake sales until a profitable opportunity shows up, at which time Big Pharma will be happy to take over. In other words, NIH is never gonna help us.
Meanwhile, the CDC is hiring consultants to do “focus groups” of “CFS” patients to review something-or-other. They are also hiring consultants to do some NPR-style interviews of patients “like Story Corps”. I suppose that like “Story Corp” the tapes will be filed away someplace for posterity and CDC management can tell Congress that they have an education campaign.
Why do I feel like Charlie Brown listening to Lucy swear that this time, she will hold the football?
A paranoid person might wonder whether there might be a rejection quota.
Superb testimony, Jennie. I’m sorry that we won’t get to hear it from you. Is there no-one who could read it out for you? It’s so powerful.
Everyone should read this at Science, submitted by #ME Action, Jen Brea’s blog.
It’s a proposal to increase funding for ME/CFS research a lot.
This is the right way to go here. Nothing to lose.
Great analogy, beautifully written, supported by detailed, relevant data, as always.
Feel better soon.
Dear Jennie, Your research as always is right on and succinctly put. Would but that common sense and logic be so easy…. I have written to Drs. Fauci and Collins for several years now regarding these same issues and their response was similar to the one you reported on: that the researchers are simply not applying for the grants. As history has shown, they are indeed and being turned down and/or the grant itself is insufficient to get any real research off the ground and they don’t know if it would be re-approved the following year. And so it goes in spite of their own government reports making a loud cry for the need for further research. As for the CDC not receiving funding this year, I’m clueless as to the details on that one because I’m currently crashed and can’t make sense out of it. I didn’t even manage to send in my comments until yesterday so will likely not be included. Wish more people with moderate ME/CFS/SEID would participate. If wishes were fishes… thanks for all that you do. marcie myers
Perfect Jennie. Thank you for sharing your knowledge and insight.
Very well written Jennie, despite being very ill. I love the fishing analogy because that is exactly what they are doing sitting back, doing nothing. How that will attract researchers in this field I will never know. You’re right we have to “bait the hook” then watch them flock to us. But whilst funding remains so difficult to obtain that would send anyone running for the hills!
Amen!
This came across my news feeds today: http://news.sciencemag.org/biology/2015/08/lobbyists-seek-250-million-new-funds-chronic-fatigue-syndrome-research
I’ve been worried about you ever since your blog about the exercise testing and your extreme efforts….have you ever recovered back to where you were? I hope your current level of illness isn’t still because of that. I know lots of people are not happy but I was glad to see on page 2 of the IOM report that they decided it is a disease in which any type of exertion ‘may adversely affect many organ systems in the body’. I feel it is clear that exertion does widespread and potentially severe damage throught our body, and that we must revert to Ramsay’s first prescription which was for complete rest from the outset. I am delighted that the psychiatrists are fuming about this…it should be a welcome sign that their empire may finally be dismantled.
Nancy, the answer is yes and no. I did recover from my exercise testing but never to my previous levels of physical activity. I had been able to tolerate a 10 minute walk before the testing, but after starting with the heart rate monitor and the time it took to adjust medications and adapt to anaerobic threshold pacing, I had lost physical condition and stamina.
On the other hand, I have been able to sustain the cognitive load of advocacy, with difficulty. And the past two years have involved a series of family health crises which have required me to dig deeper than I thought possible, emotionally and physically.
My current state of illness is the direct result of a series of crises this year. I’m not sure how much I can/will divulge details, but I will be saying more about this soon.
Thanks for your reply, Jennie. It’s possibly over-simplistic, but I consistently find that very systematic and determined conservation of physical exertion – treating any use of muscles as toxic – gradually creates overall improvement in my health. Conversely, any forced over-exertion over a period of time has set me back for at least a year. I hope that in among the crises you are able to continue to insist that your level of physical exertion be absolutely minimised, that any physical tasks are handed over to others, to enable you to continue to offer cognitive and emotional and strategic support. I know that you don’t do disability! But it seems that in this illness, not only is exertion toxic, physical relaxation is medicine….given rest, our bodies do seem to find ways to fight the illness and allow us to improve. The single most helpful behavioural adaptation for me is always keeping my head supported – that one economy of exertion makes a big difference. When I was Principal Officer Health in the Social Services Department, I could keep track of what was going on in meetings if I kept my head supported – backing up against a wall if necessary – and would completely lose the plot if not, it made that much difference. So I hope that whatever else is going on, those you are helping know they must repay you with every bit of physical help they can provide.
Its looooong past time for the U.S. gov’t to stop playing games over dibilitating, chronic illnesses caused by environmental exposures.
[Comment edited to remove link to a fundraising campaign that I neither endorse nor have any connection to. 8/24/15]
Jennie, it is very brave of you to admit your father is a herpetologist. It explains the polka.
And absolutely the NIH can do this. Why? Because they are master baiters. Every single one of them.
NIH’s handling of ME is the epitome of structural violence.
Structural violence, I’d like to be in touch…for years I have been ranting on about ‘institutional violence’ and how this should be treated like any other crime. Current striking examples are deaths following fit-for-work assessments/sanctions, but there is the massive medical abuse of ME/CFS patients by GET which, following the IOM report, should become a criminal offence. If someone in a dark alley hit you on the head, producing permanent severe disability and untreatable pain, what would the courts have to say about it? IOM says exertion ‘may have adverse effects on many organ systems in the body’…. That ought to put an end to this particular form of violence.
Why should the NIH people work to get more funding for SEID? They get their paychecks, their pensions, their perks, their prestige whether or not this disease is given any attention.
I wonder why the relatives and friends of SEID sufferers abandon their ‘loved ones” instead of taking concrete action to raise funds and make NIH bureaucrats uncomfortable by publicizing their neglect and demanding action. Look at what the advocates for HIV did — they forced it to become a major issue in the public eye.
What is it about SEID that creates such an opposite effect among those who should be most concerned?
I’d love to see your thoughts on this problem and I thank you for this wonderful blog.
It’s the Heidi effect: In the story, the spoiled little invalid girl, given fresh mountain air and a bit of encouragement, discovers she can walk! She’d only been sick because she’d been coddled and spoiled and encouraged by greedy doctors and her rich aunt to believe she was ill and disabled.
Surely, if we all just breathed a bit of fresh air and stopped thinking we were ill, we would abandon our complaints, our wheelchair, our bed.
Freud added to this mythology: if we would only accept the interpretations, which he assured us in his writings, had to be hammered home by the analyst until the patient accepted them, we too, would get over our ‘hysteria’ with its apparently physical symptoms, and get well.
Early feminists rejected the Victorian mythology that women had to be put to bed for protracted periods of rest at the slightest provocation – periods, childbirth, anything else that came down the line – woman fought for the right to wear unconstricting clothes and engage in healthy athletic activities.
When we read accounts of 18th century ‘neurasthenia’, it is easy to dismiss it as a lot of hypochondriacal nonsense – Beard described it as ‘modern nervousness’. However those of us who have ME/CFS/SEID recognise that these wide ranging, variable, long-lasting sets of symptoms do sound a lot like our illness, and if doctors put these patients to bed for protracted periods, the chances are that they did get better.
In 1955, Ramsay and Acheson were unquivocal that complete rest from the beginning of the illness gave the best chance for recovery. Their views were discredited by McEvedy and Beard, in their two articles dismissing the Royal Free outbreak as ‘mass hysteria’, a theme that was very cleverly reported in the extremely influential TIME magazine, under the heading ‘Behaviour’, describing the 1955 outbreak in patronising language, never mentioning the name of the illness, and concluding that the clinching argument in favour of its being hysteria was that most of the patients were women.
The psychiatrists supporting this view became very influential in the UK, as most of us know, and in their treatment recommendations, the dangers of ‘too much rest’ were emphasised. The dangers of bed rest were stressed generally, and now hospital patients, at least those recovering from childbirth or surgery, are encouraged to get up as early as possible, and to undertake physiotherapy and exercise within days of their confinement or operation.
Feminism insists we show ourselves able to be as active and muscular as men. Psychiatry insists that we invent our illness and must change our beliefs. Disabled people only become heroes when they prove themselves in sporting events. Businesses want their workers to carry on regardless, and any kind of sick leave is assumed to be ‘throwing a sickie’. Pharmaceutical companies make money by encouraging us, when we’ve got a cold, or flu, to take the tablets, or the powder, or the linctus, that will suppress our symptoms and just carry on. Don’t let your life be limited by illness or pain, buy our product. (You can spread your disease to others and then they’ll buy the stuff, too.) In the meantime, medical insurers and government departments concerned with disability support do all they can to get the disabled back to work, or find reasons to deny payment. If an illness is defined as psychiatric, medical insurers may only have to pay disability allowance for two years, rather than for life. If an illness is defined as psychiatric, patients can be required to undergo psychiatric treatments (which in the case of ME/CFS/SEID, include exercise programmes) and lose payments if they ‘refuse to cooperate with treatment’. Psychiatrists can earn quite a lot of money by encouraging these labels and providing these treatments.
So feminists will be embarrassed by women who can’t be physically fit and challenge feminine stereotypes. Doctors telling women to go to bed will be labelled as infantilising women. While NIH putting ME/CFS/SEID under the ‘Office of Women’s Health’, I just found out, is not only inaccurate – men get it too, it is nothing to do with being specific to women – but also this department attracts no funding..is this true?
Now listen to our patient: Many symptoms (the neurologists say that the more symptoms that are reported, the more likely it is that an illness is ‘somatoform’ – psychiatric), symptoms don’t present an anatomically or physiologically coherent pattern, furthermore they vary from day to day and hour to hour – isn’t it obvious that it is made up? That this person is a raving hypochondriac? Women are supposed to be devoted to the care of their families, hard-working, self-sacrificing, how dare they just go to bed and keep saying they just can’t do it? Everyone knows that kids will do anything to get out of school (even the ones who get top grades, are athletic, popular and happy, apparently). As for the yuppies’, the rich, spoiled young professional men who suddenly go into a heap…who’s going to have any sympathy for them?
Someone asked the question ‘why do they hate us’? They hate us because we stop doing all the things we are supposed to be doing, that they wish they could stop, we don’t contribute, we don’t ‘try’ hard enough, because surely if we were trying, we would get better, we are men and women failing to do our duty to our family and to our society, and we keep on and on and on failing until everyone absolutely gets tired of it, tired of our complaints, tired of our suffering, and they’re sure that if we are hated hard enough we will be forced to get better.
Psychiatrist Simon Wessely is reported to have his audience of insurance company representatives rolling in the aisles with laughter at his imitation of the person with ME – and then they all get letters saying their insurers will no longer pay out for disability. Newspaper columnists are vitriolic about us, Elaine Showalter wrote a book including us in her patronising account of modern hysteria, Facebook is full of posts by ME sufferers rejected and ridiculed by their families and their doctors….if hating us could cure us, we’d all be getting better! Pity it doesn’t seem to work.
Bedrest does work…but who’s going to make any money out of treating us with that?