The Feds announced they’ve reversed their decision to stop the contract with the IOM to produce a definition for doctors and are continuing forward……….End of conversation.
The ME/CFS experts have been cut out; career bureaucrats are making the decisions now. This is weird and unsettling in so many ways.
The Feds have embarked on a expensive project to redefine ME/CFS for doctors – without using ME/CFS experts
In order to save money the next CFSAC meeting will not be streamed live; meanwhile the the Feds have embarked on an expensive program – no one asked for – to produce a definition of ME/CFS for doctors by people outside the field – that’s already been done. It’s called the Canadian Consensus Criteria and it took ME/CFS experts several years to produce.
Bemoaning his inability to complete a vital ME/CFS project Dr. Lipkin recently castigated the Feds for not funding vital ME/CFS research – yet they may be spending millions of dollars to produce a definition nobody is asking for…..
Please support this movement from Mary Dimmock and friends to stop this waste of money and get ME/CFS experts back into play:
September 17 ME Advocacy Action: Urgent
Tell HHS to Stop the New IOM Contract. Tell HHS Not to Redefine ME.
Despite the strong outpouring of patient opposition to HHS’ August 27 announcement to contract the Institute of Medicine (IOM) to “develop clinical diagnostic criteria for ME/CFS”, HHS announced, on September 12, that is going forward with its contract with IOM to redefine ME. HHS plans on signing the contract with IOM before September 30 and has said it will share information with the ME community only after the contract is finalized and signed.
Adding insult to injury, HHS has announced that the fall CFSAC, long a face-to-face meeting, will not be in person but instead will be held by webinar. We are being told that HHS cannot afford a face-to-face CFSAC meeting but it can waste millions of dollars undoing the science that our experts have already created.
HHS is speaking loudly and clearly. HHS does not want to hear what we have to say about our disease. HHS has every intention of pursuing its plans to redefine ME, unilaterally and in secret. HHS dismisses the definitions of our experts and even questions the hallmark criteria of our disease. HHS has repeatedly stated that they want to use people who have no experience with our disease to develop the criteria for it. And let’s not forget the May allegations of threats of eviction of CFSAC members by an HHS staff person for speaking their minds.
The IOM contract is a waste of precious time and money. It is a waste of our precious lives!
HHS needs to adopt a definition our experts have already created and use that definition to reeducate the medical community and drive an aggressive and fully funded research campaign to validate biomarkers, understand the pathophysiology and identify treatment approaches.
Tell HHS to not sign the IOM contract. Tell HHS to stop trying to redefine our disease and start using what our experts have already created.
Additional background is below.
Immediate Actions You Can Take to Stop the Latest IOM Contract
- Send an email to Secretary Sebelius every day to voice your opposition to this contract. Directions and a sample letter are below.
- Distribute this action alert to your networks and your family and friends, and urge them to send an email.
We can and must stop HHS from wasting precious time and dollars redefining our disease.
If you have questions, please contact MEACTNOW@yahoo.com.
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Instructions for Emailing HHS:
- If you are using the sample email provided below, copy the sample email into the body of an email message. If you wish to personalize it, add a sentence or two at the beginning of the letter.
- Add your name and country to the end of the letter.
- Add the Subject Line “Stop the IOM Contract to Redefine ME”. Feel free to change the subject line from time to time to avoid spam filters. Another tip: If you have more than one email account, use one on one day and the other on another.
- Copy the following addresses into the ‘TO” and “CC” boxes
CC: howard.koh@hhs.gov, txf2@cdc.gov, Tomfrieden@cdc.gov, Marilyn.Tavenner@cms.hhs.gov, margaret.hamburg@fda.hhs.gov, Mary.Wakefield@hrsa.hhs.gov, collinsf@mail.nih.gov, richard.kronick@hhs.gov, MEACTNOW@yahoo.com
The CC includes addresses for the heads of all HHS agencies. The email address MEACTNOW@yahoo.com is used to track the numbers of messages sent.
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Sample Email for HHS – To be copied into the body of an email message.
Dear Secretary Sebelius,
I strongly urge the Department to abandon its plan to contract with the Institute of Medicine (IOM) to define its own clinical diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Researchers and clinicians with years of experience in studying and treating this disease have already created peer-reviewed case definitions – the 2003 Canadian Consensus Criteria (CCC) and the 2011 ME International Consensus Criteria (ME-ICC), which used the CCC as its baseline. These definitions are supported by clinical guidelines for medical practitioners, guidelines also created by experts. These definitions are well regarded by patients, ME doctors, and ME researchers. The CCC has been used both clinically and in research for years.
But rather than adopt these expertly defined disease criteria and the associated medical guidelines, HHS has promoted its own overly broad view of ME that does not require the hallmark symptoms of ME. HHS has questioned these hallmark criteria and misrepresented our disease in its medical education. HHS has even unilaterally reclassified “CFS” to be a subtype of chronic fatigue, in complete opposition to the standards set by the World Health Organization and all other countries that classify this disease as a neurological disease.
Now, HHS is intent on defining its own new criteria for ME using the IOM, an organization whose only effort to define a disease was harshly criticized by Gulf War Illness Advocates for redefining the disease too broadly and for using non-experts to define the disease. HHS has repeatedly stated their intent to use non-experts to define ME. This is a very serious concern for patients who face widespread disbelief every day from the general medical and research community. Adding to these concerns, the description of ME/CFS in the January 2013 IOM report on Gulf War treatments failed to accurately represent ME and listed CBT and GET as treatments, treatments that our experts have said can be harmful.
HHS is progressing the IOM contract unilaterally and with disregard for the overwhelming opposition from the ME community. HHS is undermining the work of our experts while patients are suffering and dying. HHS must stop wasting precious time and dollars. HHS must stop wasting our precious lives.
I strongly urge HHS to abandon its plans to contract with the IOM to define clinical diagnostic criteria for ME/CFS. It is time for HHS to adopt a definition that our experts have created and use that definition to drive an aggressive campaign of fully funded research and to reeducate the medical community.
Sincerely,
<Your Name>
<Your Country>
I don’t mind the idea of the IOM coming up with a new definition so long as they give it a completely new name.
As far as the CFSAC goes, are any of the other advisory committees going to be webinar based, or are we being uniquely singled out?
I would be surprised if the IOM decided to rename and redefine ME/CFS…I don’t know; that would be a good thing to check out. It certainly sounds like the type of thing government agencies might be doing with the budget the way it is but I don’t know.
Cort – Do you know how our experts themselves – Drs Klimas, Peterson, Bateman, Lapp, Montoya and the like , – do you know how are they reacting to this at the present time? Surely they must be extremely concerned?! All those who have put tremendous work in producing the CC and the ICP , surely they don’t want to see all of it go down the drain?
And I assume they have way more credibility, authority and power than us in stopping this serious mistake from happening. Can they intervene in any way and will they?
I was wondering the same thing.
Aahhh Finally! They did their move. And what a move, that is some cogent letter!
Political intervention only hope? Harry Reid? Legal action?
Writing to this lady is like p—- into the wind. We need to set up a writing campaign to our representatives, Obama!
Sent a email yesterday and just sent another just now.
I found this quote from Sebelius from the HHS.gov website. I think in tomorrows email I will paste her quote at the top.
I so want to hike, bike, play with grandkids and get a good night sleep.
When we talk about health care, we always keep in mind that we are not just talking about saving money or increasing efficiency. We are also talking about providing a higher quality of life. When people are healthy, they miss fewer days of work and get more done. They spend more time at home and less time in doctors’ offices. They can take care of their grandkids. They can play softball…They can get a good night of sleep.
– Kathleen Sebelius, The Commonwealth Fund’s 12th Annual Symposium on Health Care Policy
I created an email campaign aimed at Congress and the President. Please check it out. There’s a sample email as well as directions for contacting your Congressional delegation and the President’s science advisors.
http://twenty-years-and-counting.blogspot.com/2013/09/tell-congress-president-no-to-iom.html
Not trying to be mean here but congress is not worth the effort and frankly a waste of time trying to use our small community of resources on. If they can’t get along and stop the government from shutting down or even pass a UN treaty for disabled rights there is absolutely no way they are going to do anything about CFS. If we want to get heard by congress we need boat loads of money and lots of lobbying or an epidemic of people sick with CFS and neither is the case currently. We need to focus our efforts where it counts, like the HHS, CDC, and NIH.
Cort, I’m unclear as to why HHS is involved in defining CFS/ME. Could you help fill me in? Shouldn’t a definition be the pervue of NIH or the CDC? What’s HHS’s goal in defining CFS? Is it for use in studies, and if so, do they intend it to be used in only NIH and CDC funded studies (and potentially DOD), or do they expect it to be used as a basis for all research, governmental or private, in the US? Or is it to be used to evaluate disability claims? I’m unclear what their goal is.
The last I heard, the IACFS/ME was trying to get the ME-ICC adopted by some global medical association (or maybe I understood that incorrectly). Is anyone still pushing for some prestigious American medical association or a global medical association to adopt a standard definition for all research?
Also, does anyone know how the IOM’s definition of GWI has affected treatment and experience of those patients (I know it’s early days to evaluate that)? I wonder, does anyone really pay attention to a definition that HHS comes up with?
Disturbing developments (this and the CDC exercise study news). Not l as though we haven’t been here before, though. 😉
The IOM definition of GWS is going to take a year or more; it’s still in progress so we don’t know how that’s going to turn out. The IOM has apparently never done a definition (before the GWS one).
I don’t think anybody expected the DHHS to do this. The definition the IOM is working is for doctors not research. I think many people agree that we do need a better research definition – and the DHHS is going to convene a workshop on that – but we already have a good clinical definition – the CCC or the ICC. I’m not clear why the DHHS feels the need to develop a definition for doctor….
Cort, thanks so much for clarifying! Very helpful information.
I thought that Jason e.a. did not find the CCC or ICC a good clinical definition. It is very difficult and complicated.
Cannot figure out why, but ctrl + c is not copying the text from this blog post. I tried with two different browsers, same result in each case. As soon as I type the c for copying, the highlighting disappears, and I have nothing to copy.
I will try another day, I guess. Weird computers! I did send a letter the first time, with no problems, ah well.
Thanks for sharing the discouraging news.
Sarah
Finally it worked. Letter sent.
Sarah
I had the same problem, was able to paste it into Word BUT it loses all format and then you have to go through line by line and reformat the whole thing, PLUS every copy and paste has a 4-line tagline added to it to refer you back to the website. After fixing all of the problems I could then cut and paste from Word into my email. There is no way brainfogged people could manage this, and they may accidentally try to send the message with the 4-line link in the “To” and “CC” sections, not realizing it is pasting in far more than just the addresses you tried to copy. Cort, if there is a possibility to rework the page or remove the automatic link message so people can copy without all this extra work, it would really help.
Canadians genes are different than ours. They’ll believe that one.
Perhaps they’re looking for crayons again.
The Canadian definition appears to be more simplified than our current definition. true?
Maybe they need to see what the FDA has to say:
http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm368342.htm
This is the report of the FDA’s Patient-Focused Drug Development workshop. The
info the FDA wrote up is a good a Definition as I have seen.
Maybe we should all include it in our letters to Representatives and the President.
This is from Marcie
Dear Dr. Unger,
This is Marcie Myers and I thought it time to touch base with you again and hope that you will respond. Can you tell me the status of the teaching curriculum for the medical universities? I am even more acutely aware that there is not a single physician at Medical College of Georgia that knows anything about CFS/ME. Nor the senior or junior students. They have never even heard of it yet it has ruined my life since 1994 and rendered me incapable of being independent. Elizabeth, that is just not who I am, was, or want to be. I just found out that my 84yo Mom has terminal liver CA with about 6 months to live. I intend to go stay with her but that joke will be on both of us because any stressors simply incapacitate me further. I have a lowgrade fever again after a several month break. Would you know why? Pain that I know is not coming from any injury but directly from my brain and no one can imagine how bad it is. Fatigue so debilitating that I can walk into the kitchen because I’ve had nothing to eat in many, many hours only to head back to the couch because I literally lack the energy to fix anything no matter how simple. How do I get groceries at all? Beats me. I’ve lived alone for 13 years now and it’s become more and more difficult to hit friends up for such favors even if I pay them. My house, sadly, is a wreck. My German Mom taught me to keep an ultra-clean and neat house and this is how I would have it…. if I could. And on and on.
NOW HHS (here’s where you come in, Ms. Sebelius) has brought in the IOM, a group with zero knowledge about CFS/ME, to write THE definition of CFS/ME. I understand that their only prior job, a definition of GWS, was not met with applause by those that suffer. Surely the CDC is involved with this??? Federal to Federal? Now even I realize that the CFSAC have other responsibilities they would have to be relieved of in order to assist the IOM or to have allowed them a shot at it on their own. And, tongue in cheek, how could we possibly allow the 6-8 MD’s who actually provide care to the ONE MILLION patients that they’re charged with in order to hang around together and come up with a defintion? Is that the logic behind this decision? Cause then I would buy it. Elsewise, you will need to do much better.
Elizabeth, PLEASE, we need to HEAR FROM YOU! Why did you drop the 2-day exercise test that has proven thus far to be the best quantitative indicator of our body’s inability to respond appropriately when it IS on DAY 2 that the unanticipated and totally abnormal response shows up?
The CFS/ME “community” (I hate that word for some reason) is infuriated over the HHS decision to employ the IOM. It was done so secretively that even our CFSAC was unaware. Would you please discuss this with Dr. Sebelius and one of you make a statement that will actually make sense?
I think I could write a good enough definition of CFS/ME right now to submit for perusal given a bit of time. And I will know that it comes from a highly intelligent medically knowledgeable person that has kept up with the literature for at least the past 10 years now. It’s a pyramid beginning with the CNS with the SNS tipping the scales too far and creating ……. or I could go from the microcellular level up. Insufficient ATP production intracellularly leading to….
The research results are there. We don’t know why MS or Parkinson’s or other autoimmune disorders happen but yet they have been sufficiently defined primarily by exclusion so that an individual can receive the diagnosis. To think that a new patient with CFS/ME would go to any major medical teaching and research hospital expecting that the MD’s would know how to AT LEAST diagnose their debilitating disorder (which I would have expected) versus what I have discovered has just honestly blown me slam away.
I want to put up huge billboards: DO NOT GO HERE (MCG)! THEY HAVE NOT A CLUE! Wonder what Dr. Azizz would think about that? I may have to find out. And I will point the finger right back to the CDC (YOU) and HHS (Dr. Sebelius) and your Directors for having had this much time yet accomplishing NOTHING! And guess what it will cost me as a PSA? A billboard making such a disparaging remark would stand high for 30 days and cost only $250. Do you think that is a good idea? I mean, would it yield any positive changes from the CDC and HHS? Not that I would actually care at this point. Right now I’d like to do to all of you what you have done to all of us: make us invisible. My life has no quality anyway and I have nothing to lose. Nothing. Isn’t that sad? I’m too sick to have a relationship. I’m doomed to my aloneness. I’d gladly go with my Mom if that were possible.
THE PROBLEM IS THAT YOU STILL HAVE NO IDEA HOW HORRIBLE OUR LIVES ARE AND HOW DEBILITATING THIS DISORDER IS.
With MUCH Sincerity,