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.



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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Comments

When in doubt, take an extreme case… Good rhetorics!
If we are proven wrong by having overreacted, well, so what… it will pass quickly, we won't regret it for the rest of our lives.

But if we are proven wrong by having refrained from overreacting , we will pay from hereon in, it will not pass.
So just in case the Munch "Scream" scenario is up ahead, why not indeed go all out to stop it. We have nothing to loose by carrying out relentlessly this political action, moreover it's just for a couple of weeks.

We will never regret having tried too hard, but we sure as hell might regret not having tried hard enough.
 
Excellent reminder of what could be in store for us. Thank you, Gabby. Let's crush this POS contract!

To those who say, “let’s just lie down and accept that this contract is going forward”- the 16 additional expert signatories and 66 advocate signers are more signs that we can get this contract cancelled!

HHS has successful oppressed us for 30 years. some would say this is proof that their plans always work and we can’t stop them. But every attempt to abuse people always works… until it doesn’t. There comes a point of critical mass, a turning point where the oppressors are forced to stop because the pressure on them becomes too intense.

This really looks like the turning point for us; our Rosa Parks moment where we say “No, we won’t go to the back of the bus any more!” that finally sparks a huge change. Never before have our experts supported us before other than one at a time here and there. NOW FIFTY SO FAR have come together to support us and say “NO MORE.”

We have momentum now (see also that Canary in the Coal Mine has already raised $73K in just four days and there are three other ME docs in the works) This is the turning point. We can push this boulder over the hill now. Lets ALL get together and give it all, that our health will permit. NOW is the time to call in your favors and also just plain beg your friends and family to support us in crushing this contract. This is what I am doing and if we all do it, we will exponentially increase our force and become unstoppable! The AIDS patients did it. Let us do it! If not now, when?
 
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Many people are on the fence, they want consensus on how to move forward and respected advocates are saying "We won't win, better to compromise now."

But here is never consensus in advocacy. :/

MLK had has hands full convincing African Americans to support the Civil Rights movement as much as he did convincing White America.

Maybe in looking back people think it was what everyone wanted, but it was not. Yes they wanted to not be oppressed. Yes they wanted things better. But there was not consensus on how or when or what should or shouldn't be done.

Even the NAACP fought it King and the SLC. It's been years since I studied the history, so I don't remember how long or what it took to bring them on board. But that was the number one, largest and National Organization at that time. That was their voice. The NAACP in effect said 'Don't do this! You'll make things worse.'

MLK and the SLC campaigned as much to bring African Anerican people together in this as they did in non violent protest action.

What could be worse for us?

By resisting the IOM contract with all our might and as many numbers as we can muster we at least have a chance.

We can be seen by America and the world! Who we are and what this disease really is.

There is no reason to give in and give up at this point. It's not junior high. There's no reason to fear not being allowed to sit at this cafeteria table. There is no real power being offered to MEcfs advocates and experts at that table.

Our power is in saying NO. no more.

To paraphrase MLK, we should choose to no longer participate in an immoral system. The system falls apart without our participation: not us, we grow stronger.




And by the way, the scenario Gabby writes about? That is my life today.
 
By resisting the IOM contract with all our might and as many numbers as we can muster we at least have a chance....

There is no reason to give in and give up at this point....

There is no real power being offered to MEcfs advocates and experts at that table.
Thanks for your counsel, Delia. Those who would offer “the middle road” at this juncture must have precious little background in bargaining. HHS has demonstrated bad faith, and the IOM isn't up to this task. The experts strongly urge HHS 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.”
 
Thanks for your counsel, Delia. Those who would offer “the middle road” at this juncture must have precious little background in bargaining. HHS has demonstrated bad faith, and the IOM isn't up to this task. The experts strongly urge HHS 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.”
One point I would like to expand on here: the HHS has repeatedly demonstrated bad faith, even just counting their recent actions.
 
Many people are on the fence, they want consensus on how to move forward and respected advocates are saying "We won't win, better to compromise now."

But here is never consensus in advocacy. :/

MLK had has hands full convincing African Americans to support the Civil Rights movement as much as he did convincing White America.

Maybe in looking back people think it was what everyone wanted, but it was not. Yes they wanted to not be oppressed. Yes they wanted things better. But there was not consensus on how or when or what should or shouldn't be done.

Even the NAACP fought it King and the SLC. It's been years since I studied the history, so I don't remember how long or what it took to bring them on board. But that was the number one, largest and National Organization at that time. That was their voice. The NAACP in effect said 'Don't do this! You'll make things worse.'

MLK and the SLC campaigned as much to bring African Anerican people together in this as they did in non violent protest action.

What could be worse for us?

By resisting the IOM contract with all our might and as many numbers as we can muster we at least have a chance.

We can be seen by America and the world! Who we are and what this disease really is.

There is no reason to give in and give up at this point. It's not junior high. There's no reason to fear not being allowed to sit at this cafeteria table. There is no real power being offered to MEcfs advocates and experts at that table.

Our power is in saying NO. no more.

To paraphrase MLK, we should choose to no longer participate in an immoral system. The system falls apart without our participation: not us, we grow stronger.
I love the following quote by Elie Wiesel, the author and survivor of the holocaust.

'There may be times when we are powerless to prevent injustice, but there must never be a time when we fail to protest.'

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!


And by the way, the scenario Gabby writes about? That is my life today.
I know that this scenario is already reality for many. This scenario actually pales compared to the abuse of patients in other countries. That is more the reason to fight this so strongly. Are we willing for things to get even worse? It's enough. Never again...
 
Chronic Multisystem Illness I read at first, oh my ...
 
Thanks for your counsel, Delia. Those who would offer “the middle road” at this juncture must have precious little background in bargaining. HHS has demonstrated bad faith, and the IOM isn't up to this task. The experts strongly urge HHS 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.”
Where would AIDS patients be today if they had taken the 'middle road'?
 
Thanks --great summing up of where we are--have signed, written to Obama's advisors (identifying myself as a Canadian in the first line, just to be clear) and will write a third letter to Sebelius--we have to do what we can. Like the others here, I have zero trust in the IOM's ability or even desire to really investigate our disease--and in any case there are many others much better equipped to do so.
 
I love the following quote by Elie Wiesel, the author and survivor of the holocaust.

'There may be times when we are powerless to prevent injustice, but there must never be a time when we fail to protest.'

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!

I hope you might consider adding this to the comments over on Health Rising. A very deceptive article that sounds promising but pushes those of us who are resisting under the bus.

You can't fight both for AND Against something.
 
Thanks Gabby, for this article!

I haven't yet, but I will write in even though I'm not American - this decision has implications everywhere on the planet.
Thank you, snow
 
Gabby,
This is an amazing article and great way to bring the issues to life. Thank you.

I was struck by Delia's statement - "And by the way, the scenario Gabby writes about? That is my life today." I agree that this is the ME patient's reality today and that is exactly the problem.

The IOM Statement of Work (SOW) states that ME/CFS "shall be used to refer to Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Neuroendocrine Immune Disorder, and other terminologies in use for this illness."

But what do these terms mean and what illness is HHS talking about?

Dr. Unger and some members of the CFSAC (even voting members) view “CFS” as a condition of fatigue plus any four of the other symptoms where PEM is optional. At the last CFSAC, Dr. Unger even rhetorically asked "If a patient doesn’t have [post-exertional malaise], would you not manage them as a CFS patient?” There are CDC statements that all CCC, Fukuda, Oxford and ME-ICC describe the same set of patients and statements that recommendations from Oxford studies – aka chronic fatigue - can be appropriately applied to ME patients. Evidence based reviews like the Cochrane review, which concluded that CBT was the appropriate treatment for CFS only required studies to have 6 months of debilitating fatigue, regardless of what definition was used. Then there is HHS’ recent reclassification of CFS as being a subtype of chronic fatigue in the ICD-10-CM - a decision that is in direct conflict with World Health Organization standards that classify CFS as a neurological disease.

So what exact condition or set of conditions does HHS intend to create a definition for?

HHS could have chosen to be very precise on this point. But instead, HHS' SOW for the IOM is stunningly vague about the scope of diseases and conditions that the contract will cover. We can only conclude that HHS has designed this contract to create one clinical criteria for all the conditions that fall under the "CFS" label. Based on what HHS has said - and not said, this contract is not designed to create a definition for the neuroimmune disease characterized by PEM, cognitive dysfunction, etc.

It wont matter what experts are on the panel if they are told that the scope of their work is to create a definition for all conditions that the “CFS” label currently covers.