The NIH should be releasing it’s increased funding for chronic fatigue syndrome (ME/CFS) soon. As we wait for that let’s take a look at several things that have happened in the last month and assess where we are, and what we have learned. The first thing is that advocacy does work.
Advocacy is Working
Millions Missing Protest Gets Noticed – MEAction’s first Millions Missing protest got advocates the attention of a high-level official: Dr. Karen DeSalvo, Assistant Secretary of Health at the Department of Health and Human Services. She met with ME/CFS advocates and promised to help move things forward.
Advocacy – one piece of the puzzle of solving ME/CFS
Congressional Letter Gets the NIH’s Attention – Next, the ME/CFS advocates from the Bay Area (Shari Boxer Baker, Janet Dafoe, Gail Cooper, and Carol Broadbent) got two Congresswomen (Anna Eschoo and Zoe Lofgren) to sign a letter putting the NIH on notice that they were expecting it to keep its promise to increase funding. MEAction and The Solve ME/CFS Initiative (SMCI) and many patients worked hard to get the letter signed by no less than 55 sponsors – by far the most ever achieved for ME/CFS.
Reports from advocates privy to what happened next indicate that the letter made a splash at the NIH and provided a boost to Vickie Whittemore’s efforts.
Response to the Letter – In an encouraging sign, the response from the NIH to the Congressional letter came back quickly. It indicated that substantial progress is being made and that significant problems remain.
NIH is Moving Forward (Slowly)
Supplemental Funding Program Is Working A couple of months ago the NIH added
A couple of months ago the NIH added supplemental funding of about $100,000 each for chronic fatigue syndrome projects already underway. The good news is that major Institutes such as NINDS (nervous system) and NIAID (immune) supported it. The bad news is that major institutes such as NIAMS (rheumatology), NHLBI (heart/lung), NIDDK (diabetes) and others didn’t. Of the fifteen Institutes in the Working Group five participated.
The NIAMS drop out meant that money wasn’t available to add ME/CFS cohorts to some FM studies. If this small project was a litmus test for Institute support it didn’t go so well.
With seven studies receiving approximately an extra $100,000 in funds each, the supplemental funding program, however, appears to be something of a success.The funding will help:
- Dr. Fletcher and Dr. Nathanson at NSU will determine if men with ME/CFS respond differently to exercise than women and will explore the interaction between genetics and exercise. (It appears that the extra money allowed Dr. Fletcher to add men to a formerly all female exercise study.)
- Dr. Nacul in London will use the extra money to help him compare immune, viral and genetic markers over time in ME/CFS and MS.
- Dr. Katz and Lenny Jason will try to determine why some college students with mononucleosis are prone to develop ME/CFS.
- Drs. Campagne and Maureen Hanson of Cornell will look for changes in the gene expression of immune cells
- Stanford’s big immune researchers, Dr. Mark Davis will use new technologies to take a closer look at T-cells than has ever been done before
- Dr. Ian Lipkin of Columbia will determine what pathogens ME/CFS patients have been exposed to in the past.
ME/CFS Research Centers Are on Tap The letter stated that two RFA’s (funded grant applications)
The letter stated that two RFA’s (funded grant applications) will to fund ME/CFS research centers and an independent data collection center will be produced. The funding levels and number of the centers are unknown.
The last and probably only RFA ever for ME/CFS was in 2006. The length of time that it’s taken to get the RFA’s approved has lead to speculation that Vicky Whittemore is encountering resistance. Whittemore recently said, though, that that’s not true, that the Institutes are largely on board: the delay is just the result of NIH’s famed bureaucracy in action.
The NIH Intramural Center is Getting Educated About ME/CFS
Dr. Nath appears to be going above and beyond his mandate. He has created the ME/CFS Special Interest Group to educate the NIH Intramural Center about ME/CFS. Past experience suggests that learning about ME/CFS tends to spark researchers interest. The group has begun a lecture series by ME/CFS experts. Four presentations have taken place so far. (I believe 12 are planned).
The Intramural Center is learning about ME/CFS from a bunch of ME/CFS experts.
Getting Lenny Jason in there to speak about diagnostics early in the series was a great move. Ditto with getting Dr. Peterson to talk about his experiences over time, and having Staci Stevens and Mark Van Ness to talk about exercise testing. We have been wanting to get the exercise testing results in front of top exercise physiologists for years.
- June 15th, 2016: Anthony Komaroff, M.D.: An Overview of Chronic Fatigue Syndrome (ME/CFS)
- July 18th, 2016: Leonard Jason, Ph.D.: Diagnostic Challenges and Case Definitions for CFS and ME
- August 24th, 2016: Daniel Peterson, M.D.: CFS/ME: Perspectives from a Local Epidemic 1984-2016
- September 21st, 2016: Staci Stevens, M.A. and Mark Van Ness, Ph.D.:Cardiopulmonary Exercise Testing in ME/CFS
The Stevens/Van Ness presentation resulted in the Intramural group creating a focus group on post-exertional malaise. From Staci Steven’s email:
Dr. Mark Van Ness and I recently visited the National Institutes of Health (NIH) to present our findings on cardiopulmonary exercise testing (CPET) and the importance of the symptom of post-exertional malaise to the NIH ME/CFS Special Interest Group.
It was an encouraging trip that resulted in Dr. Brian Walitt, lead investigator of the ME/CFS Intramural Study, extending an invitation to Workwell Foundation to help recruit patients for a focus group on post-exertional malaise.
If you are a person diagnosed with ME/CFS and have post-exertional malaise, please consider enrolling in this study. Those of you who have undergone the 2 day CPET and have had an abnormal recovery response know how important it is to identify and characterize the symptom of post-exertional malaise.
If you are willing to share your experience with post-exertional malaise, please contact Ms. Barbara Stussman at:stussmanbj@mail.nih.govor call (301) 496-1788. More information is available in the Focus Group Recruitment letter. Together, let’s reach out to NIH and help them understand post-exertional malaise.
Major Needs Remain
It’s also become increasingly clear that we’re not going to get a good deal of what we hoped for. We haven’t heard anything about ways to bring new, young investigators into the field. Nothing has been said about clinical trials. (We are one successful clinical trial away from Ampligen being approved.) Research centers are great but most of the ME/CFS investigators will inevitably work outside those centers. Nothing that we know of is being done to support this critical work in ME/CFS.
So far as we know grant applications to the CFS Special Emphasis Panel – where these investigator’s grants will go – remain at the same very low levels that they’ve been at for decades. (Researchers take note: the CFS SEP is now composed almost completely of ME/CFS experts.)
Progress
It’s clearly a mixed bag but we should note that for once the bag is actually mixed. Except for one brief period, we went a good decade without virtually any good news from the NIH. Research funding steadily went down. RFA’s weren’t even in the discussion. We were advised not to mention Centers of Excellence. At one point our “Working Group” apparently didn’t even meet for over a year.
We’re not tearing up the NIH but we are making progress.
We’re not tearing up the NIH but we are finally getting RFA’s. We will have (hopefully) at least some well-funded research centers. A very large intramural study is (finally) about to start. The NIH is getting educated by ME/CFS experts.The supplemental funding program is small but it has apparently added about $700,000 in research funding. The Working Group is actually working again – it’s meeting monthly – and we have a strong advocate in Vicky Whittemore. We’re supplementing that activity with some excellent advocacy.
We are making inroads with Congress and in the NIH. We’re building a constituency on both the political and scientific levels.
Dr. Collins pledged to produce a long-term effort on ME/CFS. What we are seeing is the beginnings, but only the beginnings, of one. Does the Working Group have a long-term plan that goes above and beyond the formation of research centers? Too much remains to be done without a long-term plan to address the many needs of this disease.
We’ll hear more from Vicky Whittemore at the IACFS/ME Conference this month. The Trans-NIH ME/CFS Working Group will also be giving its first briefing probably ever on Wednesday, November 2, 2016, from 3:00-4:00pm EDT. The community will be able to ask questions.
Getting More Money Out of the NIH
The NIH received about a $2 billion dollar increase in funding this last year. Looking at recent funding levels across the 200 plus diseases and conditions the NIH keeps track of, we can both see where the money has gone, and get an idea of what we are up against.
Most programs probably received small 3-10 percent increases. Autism’s $8 million dollar increase constituted a 4% bump. Ditto with similar figures with arthritis ($8 million increase/$221 million budget), asthma ($8 million increase/$289 million budget) and brain cancer ($12 million increase/$310 million budget). (Arthritis funding has actually dropped $35 million in the past five years.)
A significant number of diseases (liver disease, COPD, Crohn’s disease, emphysema, Cooley’s disease, fibromyalgia, influenza, lupus, depression, Lyme) got little or no increase in funding. Fibromyalgia is up from $8 to 9 million/year but is still down from $12 million five years ago. (ME/CFS is slated on this table to get no increase but that’s clearly wrong.)
I only found two diseases that got major increases in funding.
Alzheimer’s got a huge boost – a 65% increase in funding in one year (from $598 million to $910 million). That surely reflects two things. One, Alzheimer’s has a strong and effective advocacy movement that has been working for years to get to this moment. Two, it’s become clear that Alzheimer’s poses a major threat to our medical system as the population ages.
With antimicrobial resistance finally being recognized as a huge threat it wasn’t surprising to see it bumped up 30% to $413 million.
The pattern from this quickie survey, though, seems pretty clear. Most diseases and conditions appear to have gotten a 4-10% increase in funding. A large number have gotten less than that and a considerable number received no funding increase at all.
It’s clear that the NIH prefers to increase funding incrementally except in cases where some sort of widely recognized, more or less urgent need pops up. Alzheimer’s and antimicrobial resistance have needed more funds for years but, for some reason, the NIH acted on them now. (It would be good to find out how that happened.) In any case, there was probably broad support for their funding increase: their time had come at the NIH.
ME/CFS’s time has come but it’s in a different category. We have some support but we don’t have the widespread support that diseases like Alzheimer’s do. I want our programs budget to at least get above $15 million/year. That, however, would require more than doubling the current budget – something that no disease came close to doing. So far as I can tell, only two programs in the NIH’s list of 200 plus conditions received more than a 30% increase in funding.
The NIH usually takes small steps; sometimes it can take big ones.
Plus, poorly funded diseases appear to have gotten less of a lift from the increased NIH funding than better-funded diseases. Only about a third of the 26 (n=9) diseases and conditions receiving less than $10 million/year received an increase. The most any of these diseases received was an extra $1 million.
On the plus side, it would only take a small increase in NIH funding – $7 million – to double ME/CFS’s budget, and there is a recent precedent for something like that occurring. From 2014 to 2015, Valley Fever’s funding jumped 300%, from $3 to $11 million dollars. We’ll see what happens.
One other cautionary note. Ron Davis – who we all know has ample reason to want research to proceed as fast as possible – has said several times that he believes that throwing too much money at this disease at once would be a mistake. That could result in money being wasted and a possible backlash. We need enough money to build a strong core of good researchers and research, but not so much money that it gets distributed to poorly conceived projects.
We deserve $250 Million a year. The level of $250M/year does not even make up for the 30 years of neglect and abuse by NIH. Adding $100K to a few existing contracts is peanuts.
This is a good discussion to have.
Maybe it’s possible some day to get $250 million but honestly, I doubt it; MS gets $100 million – are we ever going to get more money than MS? I doubt it. Prostate cancer gets $300 million/year, and pancreatic cancer gets $181 million/year – are we ever going to get as much money as two of the five top cancer killers in the country?
Unless we start funding the NIH at several times the level we are, we’re not going to see those kinds of numbers. If we quadruple the NIH’s budget we might have a shot.
But we could eventually get $50 million or $100 million. $50 million would produce about 150 studies a year. (We currently have about 10-15) That’s a lot of research. We could go very far with that.
If we got to $20 million – a huge increase by NIH standards for a disease this size – that would fund about 60 studies…That’s a lot of work…
Our biggest problem, as Suzanne Vernon has pointed out, might be finding the patients to fill those studies.
Finding the patients to fill the studies is an interesting problem. How many ME/CFS experts are there in the country? I can think of about fifteen – Peterson, Chia, Levine, Bateman, Klimas, Lapp, Bateman’s partner :), Kogelnik, his partner, Montoya, Natelson, Rowe, Baraniuk – I’m sure there are more. Say we needed 3,000 patients for 60 studies.
I imagine that we would have to look outside the ME/CFS expert community to get many of them…That might be a problem.
Natelson is scrambling to get patients now for his brain imaging study -and he’s in New York city (lol)
Suzanne Vernon is right – we need to grow the numbers of ME/CFS expert doctors as we grow research funding or we’re going to have researchers getting patients from who knows where.
Growing a field is not easy 🙂
Why shouldn’t we get more money than MS? We have more than twice as many patients and they are far ahead in viable treatments. We are a disease of acquired immune deficiency. We should be getting some of the $3 billion AIDS money, much of which is being wasted. We have a number of immune aberrations in common with HIV-AIDS.
I’m not saying we shouldn’t get as much or more money than MS. I think we should get at least as much as MS – if not more. The question is is it realistic to think at this point that we can? I suggest that it’s just not going to happen. Everybody quails at MS. Everybody doesn’t quail at ME/CFS (even though they should). There are many large MS non-profits. We have one in the U.S. I remember going on Lobby Day for the SMCI years ago- Capitol Hill was packed with red-shirted MS patients.
It just goes on and on – MS has built a strong constituency with researchers, doctors and politicians over the years. We’re in the midst of doing that.
That doesn’t mean that we can’t or won’t get a big boost from the NIH; it just suggests that we’re not going to get an MS-like boost…not yet.
Diseases where death is a possible outcome get high funding… but if you get severe me/cfs you may as well be dead… you live life unable to do anything. Me/cfs should absolutley get more funding than prostate cancer… it causes more deaths…. i.e. people who are alive but dead.
Good point! The fact that the people who get ME/CFS and FM are typically in their peak years should be taken into account. Cutting people out of the workforce in their prime is a huge drain. The NIH is just really crappy at taking burden of illness into account.
I agree!!!
I hope you can seek political support such a seeking proclamations for your mayor, state/governor, senators, reps. This will help raise awareness and put pressure on HHS, NIH, CDC to fund M.E. Fairly. Can also pursue with N.O.W. or AAUW etc since mostly women affected, so low funding is discrimination against women and M.E.
I agree with all of that but TOTALLY agree with NOW and AAUW….They are missing a huge issue that’s effecting millions of women. Thanks for mentioning that 🙂
Your last comment–about Ron Davis saying “too much too soon” could create backlash–gave me pause. I understand his thinking and support his leadership on all things ME/CFS. At the same time, the last few decades have already produced stellar pilot studies that should have already been put to the test with larger groups of patients and controls. That doesn’t require new researchers, but simply supports the solid work that has so far been ignored by the NIH.
I imagine that Ron has seen this problem first-hand and I really have no idea what his number is….
I certainly agree that we’ve had many studies with good results that just never got followed up on.
We desperately need to replicate Chia’s enterovirus studies. I have heard very senior and prestigious ME experts chime in to this effect.
By the way, that letter from NIH was not a nice letter at all. Translated from Beltway into normal English it says something like q98uu-w98-cu0852. Reminded me of the letter Kathleen Sibelius sent to Harry Reid.
The CDC has tried with mixed results. I’m not up on the final results but I didn’t get the impression that they were particularly positive nor that they concluded that he was wrong. Hopefully, Dr. Chia will put something out at some point. He does have a session at the IACFS/ME.
Maybe he was talking about some unimaginably enormous amounts of money?
Because at the Millions Missing protest he said they need government funding desperately because private donations are on a month-to-month basis so they can’t hire people and freely make plans for the future. So Dr. Ron Davis definitely wants larger funding from NIH.
I don’t know what his number is and no one is suggesting that Ron doesn’t want much larger funding from the NIH – and there is a point where more may not be helpful. Only he knows that that point it.
I get regular email from the OMF. Recently the foundation rightfully exulted that, just this past month, it received $260K from private donations. OMF is far more motivated to solve this devil than the NIH.
Having seen a video of Brian Wallitt, “our leader” at the NIH, blather on about Fibro being a somatoform illness of [insert unspoken slur expressed in sneer] middle-aged women, treatable only with exercise, Eastern religion, or whatever works for them, I have little to no faith in the NIH ME/CFS group. Oh yeah, he did speak much about how doctors must demonstrate empathy for such patients, as in their minds Fibro pain is real. Soo painful to watch, and I don’t even have Fibro. [I shall refrain from commentary on Dr. Wallitt’s theatrically empathic facial expressions.]
One more grump 🙂 – Until two years ago, the United States government spent an average of $130 MILLION PER DAY for nearly 15 years, fighting a war that then, and historically, could not be, and has never been – since Napoleonic times – won, in Afghanistan. Why should not we demand one day’s worth of completely fruitless military expenditure as an annual budget for ME research? (Demand 50, get 25; demand 130, get 65…?)
Whew, thanks for the vent, y’all.
You’re welcome 🙂
Oh, shoot. Just wanted to add that, to my mind, it is important not to totally pooh-pooh the NIH, but to push it to release far more extramural funding – so that there will be opportunities for Ron Davis, Bob Naviaux (who is now overseeing 2nd and 3rd Metabolomic studies, building on the promising first one), and others who are looking at bio-physiological bases of ME.
Thanks. Whatever the NIH does or doesn’t do we must always keep uppermost in mind that it provides more medical research funding than other source. It’s not even close really. It is a goldmine waiting to be tapped. Obviously it will take more work to get it tapped but it WILL be worth it. Private funds can’t come close to what the NIH can provide.
Woops, sorry for my error re Dr. Walitt as ME/CFS Study leader. When will I learn, when emerging from a supercrash, to read ALL the past 7 months’ backlog of info before opening my big mouth to opine…?
I think maybe today!
Cort, thanks. I know you are right counseling patience regarding the ‘gold mine.’
But my 25yo daughter lies near me in excruciating ME pain, many days crying for death. It is a nightmare. Formerly a full merit scholarship student/athlete at prestigious private college, with dreams of grad school in social work and law. Beautiful, kind, always laughing and doing nice things for her dozens of friends who seemed to live on our front porch – all but one now vanished. Hope is utterly beyond her reach most days.
What has become an ordinary, if extremely limited, life for me as an ME patient is a terror squared for a sweet child who saw her mother virtually disappear in pre-adolescence; then felt the hammer come down on herself in college.
So I have injured mother bear, big-teeth-and-claws fury about the glacial pace of this 30 year trudge. The question of Tahoe being taken seriously by the CDC 5 years before my daughter’s birth is one of many I try not to entertain anymore. But I easily insert myself into what I imagine to be the deepest, darkest parts of the hearts of Janet Dafoe and Ron Davis. So….
MAMA BEAR WANT GOLD MINE NOW!
(But Pips knows you’re right.) 🙂
Participating in a study would require making the 3.5 hour drive each way, and 2 nights at a hotel, trip down to New York City. Reimbursement offered doesn’t come close to covering more than a fraction of the cost, not even considering the PEM payback. As things are, not gonna happen.
But, IF the studies would release my individual data to me, so my doctor and I could use the results in my treatment, I would strongly consider it.
Any chance of getting this change in the way patient data is handled?
That’s a heavy cost Catherine. I wouldn’t do it either. I don’t know why some researchers won’t release personal data – it just makes sense to me to do it.
I guess my question is where are the 10,000 or so ME/CFS patients who must live in the New York City metropolitan area. Where for that matter are the 1 million people with ME/CFS. HR has about 7,000 subscribers. We are missing a lot of people and a concerted effort to find them could really reap dividends.
Great questions about getting patients involved in studies. Maybe we start with the specialists someone just listed. How many patients are on their rosters? Or the members of IACFSME? Their conference is coming up. Do the individual physicians have a way to broadcast/email about studies? Would IACFSME help?
Well guys life is rough. You all have to make sacrifices if you want help. think cause and effect. There is a space between the two. I have gone to do multiple studies and I’m really sick and have no money. I will do more. That said you all should be ashamed of yourselves that are not willing to do anything but sit on your butts and complain. This is our fight so fight. if there was a million dollars in it for you would you make it to research facility???? Don’t expect anyone to help us if we cant help ourselves sorry but that’s reality. so far I have seen nothing but talk from all of you guys. Not one person volunteering for anything. Shame on all of you. Sorry but time to put on your big boy and big girl pants.
We can’t know how much or often we’ve each volunteered, paid out-of-pocket or in health to further our cause for studies as well as protests, writing, simply being there for someone else in need. I think we all take turns, some years being more able, others less. Sometimes people need a place to vent, and this is often it. No shame to you, Jimmy, for venting about it either. We’re in this together. You are doing so much, and it is really appreciated. I have to believe that it will make a difference.
Big Boy Pants! I like that. Expansion is not easy. I think we should all think about what each of us can do to help us expand; when these new studies show up being willing to participate in them is one way to help out.
If you read the fine print you find Natelson is very fussy. And just because he’s scrambling doesn’t mean he’s scrambling effectively.
Yes, he requires that people be off sleep, anti-depressants and other brain altering drugs for at least a week but for crying out loud he’s in New York City! 🙂
We need more patient outreach is all I can say.
In my brain-fogged state today it seems to me that cfs/me needs to be sold to potential researchers by stating the obvious (over and over again): if we can crack this disease, the knowledge gained about how the human immune system really works will increase exponentially. Not only that, the increased knowledge can be applied across the board to all diseases.
That’s the kind of thinking we need to make funding this disease more than just about helping a million or so people.
Well it depends who you take for their estimates, the numbers in the US vary from a couple tens of thousands of people to around 4 million which seems a little rediculous to me and more like “general, idiopathic fatigue.”
At the rate we have to fight against regression of how we are treated and research being done, it’s kind of a relief we are making progress too!
I’m with EC on this. I would go even a step further and set some more direct/short time goals:
Cracking our disease could pay off thousandfold in ER practice. After all, we patients have the ability to survive in conditions most healthy people would die from in a few hours. That is we can survive with ridiculous low blood volumes many healthy people die from if they enter in volumetric shock due to accident/sudden blood loss. Wouldn’t ER staff and farmaceutical companies pay millions or even billions for being able to replicate our “skills”?
If Dauer would turn out to be the protective mechanisme that Naviaux and Davis believe it is, it may be a far safer and less destructive live saving mechanism compared to temporal artificial coma. What ER doctor would not like to know how to do that?
I love this thinking! I hope one of the writers among us who are frequently published in general scientific journals might jump on this subject.
Excellent point, and expressed much better than I did. Understanding this disease would open up the door to cracking the mysteries of so many other diseases. Look at the information gained from all of the aids studies…just saying.
My 52 year old son has been bedridden for years with ME. He has NO doctor, his doctors told him: we do not believe there is ME, and if we don’t believe it this disease does NOT exist. They have been unkind. I am his 24 hour a day caregiver, I am his 79 year old mother who has a pacemaker for atrial Fibrillation after an U V node ablation. We need help!. Thank you.
My son has a masters degree, and now he cannot read or listen to music or watch TV. WE live in Newport News, VA.
I am so sorry, Mrs. Boyden, for this terrible situation, so many losses on top of illness. Those of us more moderately ill are working at this as hard as we can to help your son and you, those newly or more recently ill, and hopefully even ourselves. The years go on. I hope the news here and community around it are some comfort. My deepest best wishes to you both.
I am so sorry for your son and you. I hope you join the solvecfs.org call in support group that is forming.
Mrs. Boyden, reading your post is heart-breaking. I am so sorry for your extremely difficult situation. I want to share that in 13 years of suffering with excruciating pain and fatigue that stopped my life I saw 12 doctors (most of whom ridiculed me or called me malingerer or drug-seeker) before I found a kind doctor who could diagnose and treat this wretched disease. I am aware of a doctor in Charlottesville who treats ME, whose name I think I could get from a friend there. Could your son find good Samaritan help to get there? (I know it isn’t close, especially when a 2 mile car trip makes a grueling day for so many of us.)
I feel a special empathy for you. My husband, a 74 year old post-heart-surgery patient with severe sciatica, is 24 hr. caretaker to our young daughter and me, both bedridden with severe ME. It is sooo hard for him. I can’t imagine how difficult it is for you.
It is clear to me that you need far more help than this medium can provide and I pray that you receive it. You may email me directly if you wish me to look for the doc in Charlottesville, and Cort can provide you my address. Cort??
Of course. I will send it over. I’m sure many people are in a similar situation unfortunately.
I’m in agreement with you, Cort. There is a lot happening now. It is good, clear, positive progress. Do we want more? Yes. Will we get it? Probably. Will we get it all right now with a cherry on top? Fat chance. Bureaucracies move slowly, carefully. When the NIH gets all of it’s ducks lined up it should prove to be a powerful force for the good of ME/CFS patients everywhere. I’m all for advocacy, but without all of the nit picking. Perfection is the enemy of good.
Nicely said.
“Bureaucracies move slowly, carefully. When the NIH gets all of it’s ducks lined up it should prove to be a powerful force for the good of ME/CFS patients everywhere.”
It’s a 30 billion dollar organization. Getting in there, even if slowly, is a huge deal…
I think between 30 and 50mln would be fair. There is a little contradiction. Cort, said finding patiënts for a lot of studies would be difficult. Why? If there are really a million people with ME/CFS, they are not all housebound, are they? So, conclusion: there are no million ME/CFS patiënts. It is much much much less! I think not even 100.000 in the VS.
Great point Gijs. This is why I think the NIH should fund a patient outreach project. (I’m certainly willing to participate in that).
I look at Phoenix Rising’s numbers – 18K – that’s a lot of people but there are supposedly 1 million people out there. Where the heck are they?
I think many have milder cases and are undiagnosed, many are misdiagnosed, and many have other better known diseases with which they more strongly identify. Lots of people are diagnosed with fibromyalgia and are being drugged out of their gourds, they have no idea that they have OÍ or PEM, or that addressing those issues could help them to feel and function better. Others have been diagnosed with dysautonomias, Lyme, etc. and are told that is the whole story.
I live in the Southern Appalachian Mountains, where most of my neighbors are poor and under-educated. My local MD, who has been a saint to educate herself about ME and Rx Dr. Cheney’s protocol treatments for me, tells me that she sees many, many patients whom she believes have ME. But they cannot afford regular MD visits in town, much less Dr. Cheney’s eye-popping, no Medicaid/Medicare fees, much less the hefty cost of treatments.
As well, these are not Americans who tend to surf the web for answers to their medical plights. They simply endure. If one extends this to other poor, rural areas in the US and to the inner cities, where clinics do not manage ME, I believe we come far closer to one million than we all would wish to believe.
There’s about 1300 people in the CFS/ME group on inspire. It’s not very active. My question would be what is the best way to form and reach people- I wonder how many people are on the Co/Cure listserv receiving emails.
It’s been around so long one would think quite a lot right? Well I’ve been sick for over a year with ME or CFS now and I only got on it a few weeks ago because I thought the mailing list like the website was gone, and had just heard references to it!
Doctors emailing their patients is unlikely- CFS/ME docs are already kind of in a vulnerable position depending on where they are located. Emailing people could violate HIPPA if they aren’t extremely careful so it would be best if doctor’s practices don’t specifically run such a thing. We need some way to get in contact with as many of us as possible.
Another thing we need is for these studys to succeed is to offer multiple sites to do the tests- if we can verify the tests are pretty consistent at different locations, then we need to try and get multiple hospitals in with working for the tests and have like regional coordinaters instead of one location.
One location works for the early phases and getting something on the books to move to a larger study, but once the study needs hundreds or thousands of participants the best way to get those is to make it easier for people to participate. I don’t know the standards for doing something like that admitedly.
Isn’t Dr. Younger doing something like this for his fibro work? I know those are looser trials like testing orphan meds but I wish we could apply it to broader studies.
I’d rather take a 1 hour drive into my nearest major city then commute by train 3 hours each way (or pay 1000$+ to stay one night in a shared room with strangers) in NYC. Actually I’d be willing to travel across my own state before I left the state to try and have us drive in NYC of all places.
Baltimore and Philly seem to be wastelands for CFS specialists, dysautonomia, and endo so NYC appears to be my primary city for out of network health care. Still I could at least try easier to fight about a doctor in my own state with my insurance for out of care coverage.
So I think then building a strong infrastructure and taking stock of each patient, Set real goals for each other and lets make each other accountable. So my name is here I will be more than happy to speak to anyone and start this going. It takes more than talking. Who here is ready to take there small step?? It takes one step at a time but no stopping. This is the way to win this fight. Who is ready? I’ll take the lead. By the way if you the patient can’t maybe you have a helper that can. Lets go now people while the iron is hot
The NIH should be doing a Ritux and Ampligen trials, no matter how much does it cost. I can’t understand why “little” Norwegians are doing the job NIH is supposed to do…. We are dying, bedridden in our houses. There are two potential treatments. Why aren’t they doing anything?
Probably for the same reason that they’re not really doing anything anywhere= they don’t think this disease is a priority. If they thought it was a priority they would do something about it. We have to help them get that it actually is a priority.
Maybe they don’t consider it to be a priority because history has proven it is a very tough nut to crack. Time and again scientists came up with breakthroughs findings that didn’t turn out to be repeatable. Heck, according to the current state of medical science many doctors believe our disease is not supposed to be possible to exist. Likely, they are even wright.
That leaves two options: saying that our disease doesn’t exist OR fighting an extremely uphill battle where you know you’ll likely have to undo major parts of established medical science and still risk that all your work can’t be repeated by others or yourself later after all. That’s enough to crack ones career.
If someone then comes up with a nuts theory like “hey, they just got a sudden fear of exercise” so that you don’t need to inflict pain to your brain thinking about this mystery, take personal risks AND it’s the cheaper option too…
Maybe we’d better try and find ways to mitigate this risk?
They’re waiting to see how the Norwegian studies come out. That’s why it all moves so slowly; as soon as a study is announced in one country the others just wait-and-see. So even if the Norwegians have fantastic results, it’s another wait of a few years for us here in the US.
interesting study just out from Japan. I think they might be the first to crack CFS
http://www.nature.com/articles/srep34990
Cort two questions:
Do you have a list of who is on the Special Emphasis Panel?
Any idea what Ron Davis target funding would be?
I’ve gone back and forth with the concept of too much spending at once. One the one hand there is decreasing marginal benefits and “backlash”, on the other hand there is intangibles such as attention, grant requests will go up, failures tend not to be “failures”.
The most important thing is a dramatic change in attitude from the NIH. If they made CFS a priority, they could easily spend $10M on productive research opportunities. If they can’t find the researchers, they can spend this internally. They could even spend $10M educating the medical community on existing research. I think you could actually go 7, 15(prioritization), 15, 15, 20, 25 quite easily. Sure, the first year +7 might be hard – but if you don’t signal you have some money to spend you won’t get the great requests.
For the past couple of years – at least until 2015 – when I checked – the SEP has been made up almost entirely ME/CFS researchers and experts.
No idea on Ron’s number but I agree that you have to provide enough money to get people interested.
Sorry about the delay in Okaying this comment – it got lost.
No worries, your a treasure to the CFS community.