[Disclaimer: I am not in very good shape and I do not, at the moment, have the stamina some other advocates do. But the recent developments are so monumental that I felt I nevertheless should give my impressions as best as I currently can.]
“Perfect is the Enemy of Good.”—Voltaire
In my last blog post about the CAA putting pressure on the 35 ME experts who, on September 23, 2013, signed an open letter to Secretary Sebelius urging her to adopt the CCC, I predicted that the CAA’s strategy was to get at least one signatory to change his or her mind and to get everything to unravel from there. Because if just one person falters, the unity of the expert community would be broken. Sadly, we just found out that that tactic worked. Dr. Bateman withdrew her support of the open letter this morning. Do I know for sure whether Dr. Batemen changed her mind because of CAA prodding? Of course not. But if the CAA was working in the interest of patients, it would have encouraged the experts to stick to their guns instead of implying that they might want to change their minds.
Dr. Bateman is now “support[ing] the IOM contract instead of advocating that [they] adopt the CFS Canadian Criteria as [their] official clinical definition.” I have to say this is hugely disappointing given that the expert letter “strongly urge[d] [Secretary Sebelius] to abandon efforts to reach out to groups such as the Institute of Medicine (IOM).” So, one could ask oneself why Dr. Bateman signed the letter in the first place then, especially since she is now, in essence, saying that the CCC are not good enough and that “we can do better.” So, basically, she changed her opinion on the entire substance of the letter by 180 degrees in one week. Her decision severely undermines any chance of HHS’s adoption of the CCC without attaching any strings to her support of the IOM contract, like a commitment by HHS to only have ME experts on the committee and nobody from the psych lobby.
I do not mean to call out Dr. Bateman because I have some kind of underlying issue with her. Quite the opposite. I respect Dr. Bateman very much. I even like her. She was there for us all the way in December of last year to testify at the Ampligen advisory committee meeting. I am very sorry about her tragic loss to this terrible illness and I do not believe that she has any agenda here. But that doesn’t make her move any less disappointing or painful or harmful. I would like to acknowledge, and express my gratitude for, Dr. Bateman’s substantial contributions to, and sacrifices for, the ME community in the past. I believe that she is actually coming from a good place trying to effect positive change. Nevertheless, I believe she is misguided and unfortunately, her decision changed the political landscape dramatically, for the worse for patients.
Naïveté about politics will never cease to amaze me. It’s common and it’s deadly. I have seen the we-can-do-better-than-the-CCC argument floating around the Internet. But I am afraid that option is not on the table here. Instead, we have exactly two options:
1. We will convince HHS to adopt the CCC ME disease definition.
2. We will get an ME disease definition by the IOM that revolves around “chronic fatigue” and that will make a mess of things for decades to come.
Are the CCC perfect? No, but perfect is not an option presented to us. The experts already said that the disease definition will continue to be updated over time, like it is with other illnesses. And clearly, the CCC are a much better starting point than “chronic fatigue,” which is what we’ll get from the IOM.
Does anybody really think that the IOM contract is an opportunity to create “evidence based [sic], broadly accepted clinical and research tools, [sic] that can accurately include or identify all subsets of the broad heterogeneous group that present under any case definition of CFS” using biomarkers, as Dr. Bateman suggests? Granted, that would be ideal. But given the history this patient group has with various government agencies, committees, etc., it must be abundantly clear to everybody who has been around this illness and its politics for a while that our best interest is not on the officials’ agenda. This is their opportunity to burry us, like they did with Gulf War Illness (GWI).
There have been two IOM contracts for GWI, the second one currently under way to create a disease definition. Suzanne Vernon of the CAA and Fred Friedberg of the IACFS/ME (both organization are represented on CFSAC) are on the IOM committee for GWI. Note that neither are experts on GWI. There is an unconfirmed rumor that Suzanne Vernon has a relative with GWI and it is conceivable that she has been and will be testifying on the committee as a caregiver. But given that there are 500,000 patients with GWI, the odds that she just happened to be picked as a caregiver “expert” are astronomical, especially since there are said to be plans for her to also be on the IOM committee to define “ME/CFS.”
The first IOM contract addressed treatment for GWI. The committee determined that the best clinical practices for GWI are graded-exercise therapy (GET), cognitive-behavioral therapy (CBT) and antidepressants. The committee’s report of January 2013 also mentioned those same clinical practices for “Chronic Fatigue Syndrome.” The report furthermore introduced the name “chronic multi-system illness (CMI)” to be used instead of GWI. An incredible slap in the face of the men and women who have given up their health and often their families, homes, friends and ability to earn a livelihood, all for this country.
Does any of this sound familiar to anybody? If the government has no problem throwing veterans under the bus, why would they hesitate to do the same or worse to us, given the huge nuisance we are to them. Make no mistake: The IOM contract has the overwhelming potential of leaving us worse off than Fukuda ever did! Let’s not sacrifice “much better” for an illusory “perfect!”
[I asked Dr. Bateman in an email whether she wished to try to change my assessment of events or whether she wanted to comment on my post. She has not replied.]
Thoughts About M.E. 
There is logic in the Government choosing to take the Gulf War out of the Illness, 500,000 critically ill, and un-treated Service Men and Women, who’s demise is shared with just one physician, one dentist, one neighbor, one friend, and one relative means 2,500,000 people are well aware that this disease is in some way the result of the Gulf War. And we know our Veterans have more than one of each. Change the name to localize the pain, now the GW is not so much a military connected tragedy. These Americans volunteered to serve their Country, their Country needs to Volunteer to Serve them with more respect than being denied the name of the core disease from which they suffer. ME or CFS will be treated the same by the IOM because, it was too easy the first shameful time that HHS unloaded their problems on an independent government contractor. Now the leadership can simply say: “we had nothing to do with this, it was determined by them”, and all the policies followed from there. This is coward decision making on the entire DHHS Administration. At least we have awareness of these tragic events. I believe Dr. Bateman had solid reasons for her decisions and we may never know what they may be. She is to be believed, and trusted to be loyal to the patient community. My guess is she knows more than she can say at this time.
“These Americans volunteered to serve their Country, their Country needs to Volunteer to Serve them with more respect than being denied the name of the core disease from which they suffer.”
Very well said!!!
Thanks for the blog Jeannette. I too am concerned that Dr Bateman would change her position so I just posted the following on Dr Bateman’s post:
“Dr Bateman, a week ago you were one of the 35 expert signatories demanding that HHS not contract with IOM and instead adopt the CCC which is used by most good researchers and clinicians. You were part of the consensus that HHS needs
>”to adopt the CCC now for research and clinical purposes,
and that failure to do so will significantly impede research and harm patient care.”
>”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”
Your position statement here, now promoting the IOM contract, does not address why you changed your mind so drastically in a week. I imagine that this action harms the position that you espoused a week ago.
Would you please explain why your position moved 180 degrees in a week?
thank you”
Like · Reply · 8:54pm (2 minutes ago)Reply
Thanks so for the blog Jeannette. I too am concerned that Dr Bateman changed her position so I just posted the following on Dr Bateman’s post:
“Dr Bateman, a week ago you were one of the 35 expert signatories demanding that HHS not contract with IOM and instead adopt the CCC which is used by most good researchers and clinicians. You were part of the consensus that HHS needs
>”to adopt the CCC now for research and clinical purposes,
and that failure to do so will significantly impede research and harm patient care.”
>”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”
Your position statement here, now promoting the IOM contract, does not address why you changed your mind so drastically in a week. I imagine that this action harms the position that you espoused a week ago.
Would you please explain why your position moved 180 degrees in a week?
thank you”
Like · Reply · 8:54pm (2 minutes ago)Reply
Correction: It’s chronic multi-symptom illness, and not chronic multi-system illness as i said above, which, of course, makes it even worse, if that’s possible. Sorry about that!
Jeannette, are you still on Ampligen? If, you are, are there still crashes.
i am. and yes, there are crashes.
i had an incredible amount of stress in my life recently. just to name a few: my dad almost died and i had to go germany twice to save him from the doctors there. my husband was diagnosed with something not all that good. a teacher in our daughter’s school didn’t like the fact that i am disabled, so we had to pull our daughter out of that school after a very stressful back and forth with the school and find a new one. i helped a fellow patient with a lease with a very difficult landlord up here in incline. i had somebody whom i trusted steal a fair amount of stuff from us. i had pneumonia, sinus, ear and eye infection. we bought a house. we moved 5 times in one year. i traveled to the east coast three times in 5 months for advocacy. … i could go and on.
without ampligen, i’d be bedridden by now. so, i am not in good shape, but the drug keeps me somewhat functional in extreme circumstances. but i definitely had to cut back on a lot of stuff. e.g., i am only going home every 3 or 4 weeks now, instead of every or every other week.
My gosh, Jeanette, I am SO sorry you have been through so much lately! My prayers for your healing and for your husband also.
All the more incredible that you were then able to write these important posts. This one in particular is amazing. You state so many powerful points here so well. one of the best ME blogposts I have ever read! I will try to direct as many people here as I can.
thank you, justin. it’s been an absolutely brutal year.
Jeannette I bet if you didn’t have this illness you could rule the world. I’m sorry about all the stress, when I’m stressed its almost as bad as over extending myself physically. All the travel, stress, theft, and stamina that you have had to endure, I’m surprised your even functioning. Hang in there, we appreciate you.
for me, lack of sleep and stress are absolutely deadly. that’s why the crash. but i had a couple of very good news yesterday. so, that really helped.
I think nothing is going to change for the better, until we start dragging ourselves to protest on Washinton, or do a country wide fast, something that gets main stream coverage. Maybe going to Dr. Oz, and doing the two day stress test on his show, this test is unrefutable proof theres metabolic failure happing. That cant be faked. If IOM comes back with GET or CBT, that would be beyond unacceptable. We need to be looking at how these people making these decisions are connected, this just reaks of cronism. We also need to figure out how to organize. Hope you get some energy soon.
Jeannette, you said it so well!
Re: Dr. Bateman, I have to wonder if there is some kind of blackmail regarding future funding, coming from CAA/Vernon.
Thanks for posting Jeanette. How much more are we expected to suffer? As you know, here in the UK, the only available treatment for ME is CBT and GET along with anti-depressants. I have never recovered from this ‘treatment’ Doctors simply don’t want to know here and pretend we don’t exist and that’s when they are not being abusive and trivializing our lives. An ME definition around ‘chronic fatigue’ by the IOM will be a disaster.
The CAA has finally published the letter Suzanne Vernon sent to people who signed the Open Letter to Secretary Sebelius. You can read it here: http://www.mecfsforums.com/wiki/CFIDS_Assn_of_America_Letter_to_Signers_of_Open_Letter_to_Secretary_Sebelius
Pingback: Spinning Around | Thoughts About M.E.
Pingback: An ME/CFS Petition Worth Signing – Paradigm Change
Pingback: Principled Approach: Fighting the IOM Contract is a Moral Imperative | Thoughts About M.E.
Pingback: How Do You Win A Rigged Game? – Paradigm Change
Pingback: Sebelius “Responds” to the Experts: “You Mean This Is Not What You Wanted?” | Thoughts About M.E.
Pingback: HHS and the IOM Saga: The Definition of Insanity and a Bad Case of Stockholm Syndrome | Thoughts About M.E.