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The Nightmare Scenario - IOM Case Definition Contract Terrifies ME/CFS Advocates

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Gabby (Nielk) presents a nightmare vision of what the future might hold for ME/CFS patients in the US, if the Institute of Medicine (IOM) contract to redefine ME/CFS turns out as badly as many patients and advocates fear.

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Imagine that you magically wake up to a day in October of 2015. Unfortunately you are still ill with ME/CFS and it's just another ordinary day of suffering for you. As usual, you log on to your computer with your favorite drink in hand. You start becoming edgy because you can’t seem to find your usual sites. You don't see any mention of Myalgic Encephalomyelitis (ME) nor Chronic Fatigue Syndrome (CFS). Could it be that someone hacked into your computer and deleted all your favorite sites? Instead you see the name Chronic Multisymptom Illness (CMI) popping up all over. You feel real confused: isn't that the name they gave to Gulf War Illness? What happened to ME/CFS? Where are the ’advocacy calls to action’ to stop the IOM contract?

You have an appointment with your doctor today. He greets you with a weird grin on his face. "Ms/Mr……, do you need me to adjust your antidepressant dosage again?" You ask him "what antidepressant?" He says "The one we started you on based on the new HHS booklet: 'Treatment Guide: Chronic Multisystem Illness – for clinicians'." You rub your eyes and start becoming real irritated. The doctor rolls his eyes and says, "I see you have not followed up with your cognitive behavioral therapist! How do you expect to ever improve if you don’t follow up with the doctor’s orders? Are you keeping up with your GET exercises as instructed? Well, we will have to continue discussing this at your next appointment because your allotted 6 minutes are up".

Your headache level has just gone up a few notches. As usual after the physical exertion of a doctor's visit, you start feeling like your body is made out of lead and you can hardly drag your feet home. As you step through the door, you pick up your day's mail. You see a letter from Social Security Administration. You are anxious to open it up. "It is probably my disability check that is due", you are thinking. Instead, you find a ‘determination’ letter informing you that they have cancelled your disability benefits due to the fact that ‘mental health disorders’ are only covered for a maximum of two years.


'Chronic Multisymptom Illness'

Because you have become so weak from going out of the house, you can hardly crawl back into bed. You call your family member/friend and cry to them about what is happening to you. You are greeted by a long silence. You get really scared now, what’s going on here? They patiently explain to you that this is all expected now and is all due to the ‘redefinition’ of the illness by the honorable, respected Institute of Medicine (IOM). Six months ago, the Institute of Medicine - who were commissioned by HHS to redefine ME/CFS - delivered their new, improved definition and diagnostic criteria. In order to be diagnosed with the illness now, all you need is four out of a list of 18 possible symptoms. They have renamed it - 'Chronic Multisymptom Illness' - and have classified it as a 'mental health disorder’. It is considered a state of ‘unwellness’ where patients have some vague sort of combination of complaints. It is mostly due to stress and mental fatigue, most likely due to some type of child abuse and/or PTSD. There is really not much that society can do except keep patients as comfortable as possible with antidepressants and with cognitive behavioral therapy. To keep them in good shape, all forms of exercise are encouraged.

"This must be a nightmare", you are thinking. How could this have happened? HHS promised that they would work in tandem with IOM to come up with appropriate diagnostic criteria based on scientific studies and findings. You know that there are studies out that show biological abnormalities such as low natural killer cells, high viral titers, abnormalities in two day exercise testing and more. You certainly remember that 35 expert clinicians and researchers were trying to fight this and signed an open letter to HHS to cancel the IOM contract and adopt the Canadian Consensus Criteria.

You realize that it is time to take your dose of Valtrex, but your bottle is empty. You call your local pharmacy to ask for a refill. The pharmacist reminds you that the cost for your prescription will now be $350. You almost fall off your bed and ask "but what about my insurance?" The pharmacist replies that he called the insurance plan administrator and they do not cover this medication for ‘MCI’. You will have to pay out of pocket from now on.

Now you are really fuming and cry out in despair. You call up the one friend who also suffers from ME/CFS. Her voice on the phone sounds really shaky and weak, almost like a whisper. You explain to her that you have been asleep for two years and just woke up in a different world that doesn't make sense. Ah, she says, you missed all the fiasco. This is indeed a different world for us now. We have become totally marginalized by the medical system. We are looked upon as weak malingerers who have psychosomatic symptoms.

All testing and research into the disease has been halted. The recommended and only treatments are GET/CBT, Yoga, breathing exercises and antidepressants. There is no insurance coverage for any other treatment or medical testing. If you are lucky to get disability it is only for two years.

You have suddenly become so tired that you can’t even finish your conversation with your friend. Your head hits the pillow and as you fall asleep, your last thoughts are: "I hope this is all just a nightmare!"


Experts Speak Out

This of course is a dramatization depicting the worst possible outcome of the work of the Institute of Medicine to redefine the disease. There are some who have faith that this process will work and that the IOM - with the help and guidance of ME/CFS stakeholders - will produce an adequate diagnostic clinical criteria. Others fear that they will follow the example they set when re-defining Gulf War Illness, rename ME/CFS as 'Chronic Multisymptom Illness' or something similar, and treat it as a 'state of depression'.

Our expert clinicians and researchers have written an historic open letter to HHS, stating:

"We strongly urge the Department of Health and Human Services (HHS) to follow our lead by using the CCC as the sole case definition for ME/CFS in all of the Department’s activities related to this disease.

In addition, we strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS. Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease. Worse, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable."

Don't Let It Come To This

If you would like HHS to cancel the IOM contract, please take action.

For U.S. citizens:

Simple instructions for e-mailing President Obama's science advisers HERE.

Simple instructions for e-mailing your congressional representatives HERE.

Simple instructions for e-mailing president Obama and vice president Biden HERE.

For everyone worldwide:

You can sign the petition to stop the IOM contract HERE.

The petition in support of the expert's letter is HERE.


Further links

Jennie Spotila obtained the Statement of Work (SOW) from HHS for their contract with the IOM.

A letter signed by 35 ME/CFS expert clinicians and experts was sent to HHS urging them to follow their lead and adopt the CCC and to cancel the IOM contract.

Dr. Lily Chu’s letter to HHS asking them to cancel the IOM contract

Dr. Ellie Stein issues a statement in support of the letter signed by the 35 experts against the IOM contract.

PANDORA issued their new position on the IOM contract.

The National CFIDS Foundation issued a stance against the IOM contract.

The CFIDS Association issued a “clarification” statement.

Dr. Lucinda Bateman, who was one of the 35 signers of the experts’ letter to HHS, issued a statement re-thinking her position.

Letter by National Alliance for ME to HHS stating their support for the letter of the 35 experts.




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OMG it's a huge deal over here. They're just rolling in a national health care system where everyone is required to sign up or else, and the website to sign up for it has been crashed for weeks. https://www.healthcare.gov/
Sebellius' head could roll over this - yep - the same Sebellius we're dealing with for our IOM issue.

The website seems to be working..........?

I do realise that healtcare reforms are a big deal in the US. I don't live in a cave really. I just didn't know what website you were referring to :)
 
Folks I don't want to sound a down note, but given the unbelievable pressure on Sibelius and Co right now regarding the healthcare website failure, I'm not sure whether any of their staff will have attention for the IOM issue.

The timing couldn't be worse. Everyone in the entire HHS dept must be being hammered by all directions to fix that website, hair on fire kind of panic in the bureaucracy. IOM stuff? Not a priority. Not to say folks should stop advocating, but I'm just feeling a bit concerned that this other issue is a serious distraction from IOM.

On the contrary! :)

This is the right time to pressure Democratic Senators Tom Harkin and Patty Murray on the HHS subcommittee to put pressure on Sibellius to cancel the IOM contract before we start hitting the media. It's already on ABCnews.com, in with a video abd article on the canary project.

I have posted their contact info earlier. I will go get that and put it in my signature.

Dems do NOT want more bad things out about Sebellius. They don't want more scandal and we are preparing to go public with this.

Below is my post from the other day:

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Call and ask for the staffer who covers the HHS:

(Also: you can contact their offices as a citizen of the US you don't have to live in Iowa. This is a common misunderstanding. You can contact these people if you live in other countries too., if the action affects you and it's not a Foriegn Policy issue. and this isn't. :)

The reason for Harkin and Murray is because they are top Democrats and the only ones on HHS. We need them to worry about the fact that we are going public on a big way against Sebellius, which Dems DON'T want as a reappointment process will muck up the works for months and months.

Here's what to say on you follow up phone (or fax or email if you, like me can't talk on the phone well anymore):

"Thank you Senator __________


MEcfs Patients and their allies are presently preparing a media campaign against Secretary Sebellius and The IOM contract, the unnecessary taxpayer waste, Sebellius's documented unsavory actions, her inexplicably ignoring the experts and patients on this matter.


We will also be bringing public attention to the IOM's abysmal treatment Gulf War Veterans.

The media campaign and resistance efforts to the IOM contract is ready to go, if our efforts with you and Senator Harkin fail to make headway in convincing Sebellius to abandon and cancel the contract that is not in the best interests of the patients.

We are working on a two week window to give you time to talk to the Secretary.

Thank you."

Name




The point is-they don't want more fuel to her fire and want to avoid a resignation. Or any more dirt on

Senator Patty Murray 202-224-2621
DC Fax: 202-224-0238
Contact Senator Murray:http://www.murray.senate.gov/public/index.cfm/contactme...See More
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Senator Tom Harkin Contact Senator Harkin:http://www.harkin.senate.gov/contact_opinion.cfm
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The motto of the generation of the children of holocaust survivors is 'never again'.

We know what happened in the past when CDC got involved with defining our illness. We had the Oxford and Fuduka criteria. The CDC has not been willing to update these criteria, regardless of the pressure by the clinicians and researchers, patients and advocates.

At the last CFSAC meeting, when Mr. Kraftchick pretty much begged CDC to adopt the CCC now, as the IACFSME has done, Dr. Unger's answer was 'it is too complicated for clinicians to use".

Never Again!

So true, what has happened in the past and the fact this illness is so complex, shows percisely why ALL the ones on the panel NEED to be experts in ME/CFS.

For that panel to be sure a good one doing the right things for us, we also need all aspects of ME/CFS covered, well as many as possible as there are sooo many (only one psych or behaviour person is needed on an unbiased panel, to allow room for our experts in other areas to be on the panel and I'd bet my panties that they would put more then one psych on that panel.. putting biased on this area and ignoring other areas which should of been represented).

Whenever I think of Dr Ungers excuse of why the CCC isnt used, I think of just how much that show and proves that ME/CFS (ME and CFS, not lumping them together) needs to become a proper speciality areas in which specialists of a certain field are actually properly trained in eg Neurologists, endrocrines for ME patients (like what happens with other serious complex illnesses, GPs are not expected to be having to treat other complex serious illness so why us?). This is where the problem actually lies.

Hiding the complexities of a disease (as those like DR Urger seem to support by lack of support of the CCC as its too complex), doesnt make the disease complexities go away... all it does then is leave them ignored.
.........................

When I read the PANDORA link (which I was very glad to read and hear what they had to say.. they are in a difficult position there I think). Quite a few things stood out to me. One being that the GWS advocates were saying that there needed to be more neuroligists, endocrinologists, immunologists and clinicitains who specialist in GWS on the OMI committee.

The comment in PANDORAS statement "since then IOM added another neurologist to the commitee "(which sounded like this was supposed to be a good thing). I personally dont see that as a good thing at all but rather that adding just ONE PERSON more, when they are being told that all those other things were being needed for better balance. To add in of ONE more neuroloigst (when more of the rest were needed too) sounds like just a token add in to get the advocates to back off. They obviously werent listened to about what was really needed to get balance there. Why would we get listened to any more then they did?

The part in PANDORAs statement that the OMI contract was legally binding so had to go ahead.. ummm any contract which is shown to be very wrong and shouldnt have been done, can be broken even legally binding ones. Sure there would probably be a penalty eg compensation to be paid out due to a breach of contract but it could be broken and that penality taken (which I'd think would be far less then the money being wasted on the OMI contract).

It should be a situation of "cut and count your looses" before going any further (and someones head should roll for doing it like it was done.. I personally think it was rushed throu for that very reason.. to try to stop people speaking out). It would teach those in high up places that they need to start truely considering what ME/CFS patients do and dont need do.
 
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Dear Mrs. Kathleen Sebelius

There exist issues of conflict of interest, bias, lack of accuracy and consistency, lack of independence, and public interest issues in relation to IOM and its contract to define ME/CFS.

Conflict of interest

IOM itself has a conflict of interest as it is the author and owner of the 5 Reports into GWI below where ME/CFS is extensively mentioned and the IOM’s position on ME/CFS is stated. It’s stated position in these 5 reports creates a conflict of interest, as it failed to include vital biological research findings, some 5,000 papers, and had psychiatric bias in all 5 reports. Further details presented below in synopsis of reports and relevant pages from reports.

Bias

IOM failed to look at the biological research and findings into ME/CFS which amount to approximately 5,000 papers in the 5 Reports into GWI below where ME/CFS is extensively mentioned and the IOM’s position on ME/CFS is stated. Yet the IOM quoted the psychiatric papers, some of which had serious scientific and historical flaws and errors. And the IOM recommended psychiatric based treatments. This strongly indicates psychiatric bias in these 5 reports. Further details presented below in synopsis of reports and relevant pages from reports.

Lack of Accuracy and Consistency

The lack of accuracy pertains to the ignoring and omitting of important biological research and findings into ME/CFS which amount to approximately 5,000 papers in the 5 Reports into GWI below where ME/CFS is extensively mentioned and the IOM’s position on ME/CFS is stated. The omission of Canadian Criteria 2003, Nightingale Criteria 2007, International Consensus Criteria 2011 point to further lack of accuracy. The “primary research” source in these 5 GWI reports failed to include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. The reluctance and refusal to interview medical doctors who have successfully treated ME/CFS also blocked accuracy in the 5 reports.

As regards consistency, the IOM’s position on ME/CFS may become inconsistent if it examines, analyses and includes biological scientific facts in the new definition which were not included in the 5 GWI reports.

Independence

The IOM selected the committees for these 5 GWI reports below where ME/CFS was extensively mentioned and the position on ME/CFS stated. The IOM oversaw these committees, was in regular communication with them and the IOM had the power to read the final report and recommend amendments or changes in line with scientific and medical facts and public interest issues.
The continued selection of committee members with obvious psychiatric bias in 5 GWI committees producing 5 reports, all of them with psychiatric bias strongly suggests a pre-conceived position and viewpoints, a lack of independence and a lack of independent thinking. The latter being obvious through the omission of biological scientific and medical facts.

The Public Interest

There are matters here of great concern to the health and safety of the American people. This is outlined on the following web site detailing those people who have died of ME/CFS and it’s health complications - http://www.ncf-net.org/memorial.htm The neglect of patients through the use of ineffective, useless and harmful psychological treatments and the stigma and prejudice surrounding this in societies has been a major contributor to these deaths and years of suffering.

5 Reports by IOM mentioning ME/CFS and stating their position on ME/CFS from 2000 – 2013

I have only included a brief synopsis of each report and links to relevant pages from the report

Gulf War and Health (2013)
Reeves paper cited and contains several important flaws, including a prevalence figure of 2.54%. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Page 22 states that ME/CFS is a somatoform disorder, which is a vague psychiatric illness. Page 97 mentions somatic symptoms. The “primary research” source not included. Primary research should have been included and should have contained findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. The psychiatric based NICE guidelines were included in the definition along with the outdated Fukuda definition which is vague and imprecise, but the Canadian Criteria (2003) and Nightingale Critera (2007) and International Consensus Criteria (2011) were ignored and excluded. Psychiatric treatments such as CBT, GET and psychiatric drugs were recommended for ME/CFS. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored.
http://books.nap.edu/openbook.php?record_id=13539&page=22

http://books.nap.edu/openbook.php?record_id=13539&page=97
http://books.nap.edu/openbook.php?record_id=13539&page=98
http://books.nap.edu/openbook.php?record_id=13539&page=99
http://books.nap.edu/openbook.php?record_id=13539&page=100
http://www.nap.edu/openbook.php?record_id=13539&page=120

Gulf War and Health (2010)
Wessely cited and Straus cited. Wessely’s 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.
http://www.nap.edu/openbook.php?record_id=12835&page=210
http://www.nap.edu/openbook.php?record_id=12835&page=211
http://www.nap.edu/openbook.php?record_id=12835&page=212
http://www.nap.edu/openbook.php?record_id=12835&page=213
http://www.nap.edu/openbook.php?record_id=12835&page=214

Gulf War and Health (2008)
Wessely cited and Straus cited. Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Telephone and mail shots used as “primary research” source. The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.
http://www.nap.edu/openbook.php?record_id=11922&page=174
http://www.nap.edu/openbook.php?record_id=11922&page=175
http://www.nap.edu/openbook.php?record_id=11922&page=176
http://www.nap.edu/openbook.php?record_id=11922&page=177
http://www.nap.edu/openbook.php?record_id=11922&page=178

Gulf War and Health (2006)
Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.
http://www.nap.edu/openbook.php?record_id=11729&page=161
http://www.nap.edu/openbook.php?record_id=11729&page=1612
http://www.nap.edu/openbook.php?record_id=11729&page=163
http://www.nap.edu/openbook.php?record_id=11729&page=164
http://www.nap.edu/openbook.php?record_id=11729&page=165

Gulf War and Health: Volume 1. Depleted Uranium, Pyridostigmine Bromide, Sarin, and Vaccines (2000)
Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. ME/CFS assumed to be a somatoform disorder.
http://www.nap.edu/openbook.php?record_id=9953&page=343
Quotation from report http://www.nap.edu/openbook.php?record_id=9953&page=343
“ The recognition of a new disease is far from straightforward (Wegman et al., 1997). The simplest statement is that it is a process (Kety, 1974), often taking years. The purpose of the process is to demonstrate that patients are affected by a unique clinical entity distinct from all other established clinical diagnoses. The individual “steps” for gathering and interpreting evidence are not clear-cut. Evidence from biomedical research plays a prominent, but not necessarily exclusive, role in defining and classifying a new disease. Social factors, including culture and economics, influence the recognition, classification, and definition of a new disease (Rosenberg, 1988; Aronowitz, 1998; Wessely et al., 1998).”
This is contradicted by the way that ME/CFS and Fibromyalgia has been recognised and classified by some psychiatrists. Recognising and classifying a new disease is very straightforward for some psychiatrists, they just term it a psychiatric illness and in some cases give it a new definition and classification to suit their own purposes. They even create a competing definition of their own in order to take over an illness. And they conveniently ignore all the biological and biomedical evidence which prove its not a psychiatric illness. Several physical illnesses were wrongly classified as psychiatric in the past, but have since been proved to be physical and biological illnesses not psychiatric.
http://www.nap.edu/openbook.php?record_id=9953&page=350
http://www.nap.edu/openbook.php?record_id=9953&page=354
http://www.nap.edu/openbook.php?record_id=9953&page=355

Yours Sincerely
David Egan.
ME/CFS advocates in USA and European Union
Campaign for an ME Clinic www.me-ireland.com