Occupy CFS: My Feedback to IoM

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This is what I wrote to the IOM:


I’m writing to you as a patient from the Netherlands. Where I live, the only ‘treatments’ on offer are CBT and GET. Which are at best not helpful, and at worst harmful. These ‘treatments’ are offered under the assumption that ME/cfs is psychogenic, and all evidence to the contrary is disregarded. This alone is harmful, because it means patients are denied access to tests and real treatment. And the kind of CBT used to ‘treat’ ME/cfs can be harmful, and GET has made many patients worse.

I’m very concerned about the involvement of the IOM in determining the appropriate criteria for ME/cfs. Not only is this completely redundant, it is also unwanted.

It is redundant because there are already excellent criteria in place, which are endorsed by the majority of doctors and researchers who treat and study this disease. As you well know these are the Canadian Consensus Criteria.

It is unwanted because the patient community have also generally accepted these criteria, since they accurately describe the severity of the disease. Patients have been asking them to be endorsed by the government for years, so they can finally get access to the proper tests and treatment they so direly need.

I was not happy when I found out that the DHHS had hired the IOM to look into the various criteria. Not only does this clearly go against the patients’ and experts’ wishes, it also does not follow the CFSAC recommendationto host a workshop in consultation with CFSAC and ME/CFS experts. The secrecy and speed at which the IOM was contracted also raised my suspicions. Furthermore, the IOM does not have the expertise dealing with the complexities of both the disease and the definition issues.

I have since found out my reservations were warranted. Only eight of the members have any expertise in ME/cfs, and there are four members that raise my concerns because they have a possibly biased view of the nature of ME/cfs, to wit that it is psychogenic. These members are Dr Alegria, Dr Ganiats, Dr Mulrow, and Dr Cleeland.

First, Dr Margarita Alegria seems to equate CFS with neurasthenia, an antiquated psychiatric disorder. That alone is reason for concern. If she is willing to believe in a disorder that the medical profession has already relegated to the dustbin ages ago, what is she willing to believe? Is she open to new, fresh ideas?

Second, Dr Theodore Ganiats has to have close ties to the American Academy of Family Practitioners. The AAFP has published outdated, inaccurate and incomplete material about ME/CFS as recently as 2012. And which recommend CBT and GET as effective treatments. Dr. Ganiats’s appears to be a close colleague of Dr. William Sieber, who has stated that CFS is caused by psychological problems. In what way is Dr Ganiats influenced by these views?


Third, Dr Cynthia Mulrow led the last systematic evidence review on CFS by the AHRQ in 2001. The report stated, “The validity of any definition is difficult to establish because there are no clear biologic markers for CFS, and no effective treatments specific only to CFS have been identified.” This is statement is very troublesome. If Dr. Mulrow doesn’t understand how the criteria differ, and how these dissimilar criteria have resulted in poor results and therefore poor funding, then she is not appropriate to judge any criteria or their validity. What is even more worrying is that in 2001 Dr Mulrow considered CBT and GET were promising treatments. Again, it all comes down to being able to differentiate between the different criteria and the ability of identifying study weaknesses based on them.

Forth, Dr Cleeland has published on cancer-related fatigue, and recommends Graded Exercise Therapy as a treatment. Does Dr Cleeland realise that ME/cfs is so much more than fatigue, and that GET is even contraindicated for these patients?

To make a long story short, there are just too many red flags. To me it seems this construction of engaging the IOM and creating a panel with so many members who appear to be very prone to psychogenic bias, was deliberate.

The US government, and many other governments including my own, do not take this disease seriously. If they did, they would have chosen to help patients decades ago. My fear is that, if the DHHS and IOM come up with the wrong definition (i.e. anything other than the CCC or ICC, but rather with something like NICE or Oxford), that other governments in the world will follow suit. This will mean further denial, neglect, and abuse of a very sick and disabled population.

I therefore urge you to cancel this contract. Do not harm us anymore. Listen to those who know: the patients and their experts: adopt the CCC now!

Sincerely,

A Jansen, Netherlands
 
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Dear IOM (and HHS),

On behalf of myself and with consideration to the millions of individuals worldwide affected by the neuro-immune disease myalgic encephalomyelitis, I implore you to immediately cancel the HHS-IOM contract—to which our community has been repeatedly denied access.

I am both saddened and deeply troubled that past IOM committees have endorsed authors who ignore, distort, and conceal biological evidence of this disease—actions which represent an aggressive campaign of disinformation and propagation of the ME psychogenic meme.

I am saddened and deeply troubled that the Institute of *Medicine* chooses to willingly participate in the abuse and traumatization of individuals with ME, a patient group bound physically by a shared corporal anomaly, and bound socially by decades of discrimination and social persecution.

Whether legitimately recognized or not, we—as do all humans—have a God-given right to self-determination. ME patients and ME experts have together overwhelmingly embraced the most scientifically-sound ME criteria to date, the Canadian Consensus Criteria. And we ask that you too respect and embrace this scientifically-sound decision.

On behalf of myself, and those with whom I walk this path; On behalf of those stolen from their homes, those imprisoned by psychiatrists and armed police; On behalf of those who have taken their own lives, to escape pain and persecution—for these are the ongoing legacy of much ME policy—

On behalf of all lives touched by this terrible disease, I ask that IOM divorce itself from the ME psychogenic meme. I ask for cancellation of the HHS-IOM ME/CFS contract. I ask that both agencies (IOM and HHS) respect the ME community’s (patients, loved ones, and our chosen doctors) right to self-determination, scientific truth, healing, and a life free from psychiatric persecution.

The Institute of Medicine inscribes each of its reports with a quote from Goethe, and so I'll offer these words of Faust:

"But who will dare to speak the truth out clear?
The few who anything of truth have learned,
And foolishly did not keep truth concealed,
Their thoughts and visions to the common herd revealed,
Since time began we've crucified and burned”

Sincerely,
...............
 

justinreilly

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Aziza, I found your comments to be pleasingly concise and right on point. Nailed it!

Chris, while yours and mine didn't have the virtue of conciseness that some others had, there is a place for our long-windedness too. I appreciate your in-depth look at these studies. It provides great information for those who wish to dive in and really get and understanding of where these panelists are coming from. Thanks for posting it and thanks for your hard work on Jennie's committee.
 

Chris

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@ Ember–thanks for the reminder, but in fact I did know that paper, and am a bit puzzled at what in my letter led you to believe that I did not–I have two main references to the issue of definitions, the first a comment on Mulrow’s not finding any association between different definitions and outcomes–I made a cheap shot about the futility of spending $1,000,000. on a new one "while we already have 2 that seem to work quite well in practice"–the shot should have been aimed at HHS rather than IOM, but in no way is critical of either the CCC or the ICC, and really reflects my sense that there is going to be a great deal of new and important research coming in that will make any new definition obsolete almost before it is published. As I state, Mulrow wrote this in 2001, and cannot be held responsible for not knowing those later and better definitions. But it was an ill judged shot, and I now regret it.
The fact is that definitions do matter, but are tricky, and do not always fish out what it is expected they will fish out. The new paper you point to says, for instance, "the symptom requirements of the 1994 CDC are considered broadly inclusive, which may increase the likelihood of clinically heterogenous patient sets. ...the more specific requirements of the ICC however, may select patients that are less clinically diverse." I think this is probably true overall, but I happen to be one of those odd people who are rejected by Fukuda, yet embraced by the ICC and, I am sure though have not checked recently, CCC. Definitions are indeed tricky things!
Best, Chris
 

Ember

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@ Ember–thanks for the reminder, but in fact I did know that paper, and am a bit puzzled at what in my letter led you to believe that I did not...
No wonder you're puzzled! My apologies, Chris.:oops:

I was picking up on a sentence from Justin's letter instead: "The number of studies using CCC is quite small and there are no studies, to my knowledge using ICC."
 

justinreilly

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Cleeland recommends GET?? I missed this entirely.
I posted on Facebook that they may have Cleeland on there bc he is a psych focused on SYMPTOMS (of cancer) and that GET is the most highly recommended tx for cancer fatigue, it appears. I said they may have been counting on his having this in his mind which might make it harder for him to reject GET as a therapy for ME. Perhaps this came from what I said.

Or maybe someone else found a reference to him recommending GET for cancer fatigue. He has written papers on cancer fatigue so I would expect he would have recommended GET for it, but I do not have free access to journals, so i couldn't check that out.
 

WillowJ

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I posted on Facebook that they may have Cleeland on there bc he is a psych focused on SYMPTOMS (of cancer) and that GET is the most highly recommended tx for cancer fatigue, it appears. I said they may have been counting on his having this in his mind which might make it harder for him to reject GET as a therapy for ME. Perhaps this came from what I said.

Or maybe someone else found a reference to him recommending GET for cancer fatigue. He has written papers on cancer fatigue so I would expect he would have recommended GET for it, but I do not have free access to journals, so i couldn't check that out.
of the few papers/abstracts I saw (recent ones, mostly of pain), he was very focused on pathology, treating with medicine, etc. Also outcomes, but there was nothing that bothered me there. Some might have been free full text, I forgot.

I expected to be troubled by him because he is a psych that deals with pain, and we have seen many psychs involved in pain and cancer who are not helpful, but when I looked at the premises of his actual papers I was impressed. If you want to argue he is not cool, someone needs to cite an actual paper he actually wrote.
 
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justinreilly

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OK, glad Cleeland seemed good!

I didn't mention him in my letter as a bad choice, other than generally saying the non-experts, other than Davis must be replaced.

I just brought up on Facebook what i said here. I was hoping someone would get free access to his relevant fatigue papers and see what he said. And of course, if he just said GET was great for cancer, I would have noted in my letter that he said that, which doesn't mean he isn't a good and good faith doctor, just that since anyone who hears or says GET is good, GET is good, GET is good all the time, might subconsciously have more difficulty rejecting it for ME just out of habit, bc he's a person not a robot.

btw, it's certainly possible that GET works or is at least benign in most diseases, and the literature seems to say that. Likewise, I think CBT (if done competently) is good for most people, just like psychotherapy is good for most people (leaving out consideration of monetary cost), whether neurotic or not. I admire Beck, the father of CBT. I even think CBT can be moderately helpful in ME if done right- i.e. focus on pacing and not getting down on yourself for not being able to do as much as before. What is reprehensible is promoting CBT to in turn promote GET and to 'correct false illness beliefs'. And I also do think the scientific support for CBT is overblown in general.

So, I am not one to reject anyone for being a psychologist or even a CBT expert or psychiatrist, as some advocates are. Though I certainly think no psychiatrists should be on any panel for our disease unless they are Ellie Stein!
 

WillowJ

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ok, I looked specifically for papers on cancer and exercise, and I found one. However it should be noted that exercise is only one strategy out of many, including looking for "infection, fluid and electrolyte imbalances, or cardiac dysfunction". When a specific cause cannot be identified, in addition to "moderate" exercise, "nutritional and sleep interventions" are mentioned.

Missing is cytokines, but this paper is 13 years old.

http://www.ncbi.nlm.nih.gov/pubmed/11195408


Here is an recent example of a symptoms of cancer paper. The full text is free.

I'm not sure why this kind of paper is thought to be a problem.

Maybe Cleeland could untangle some of the reporting scales currently (mis)used in CFS papers. (Of course, only ME experts should be on an actual ME definition panel, but we can always use more people researching ME!)

http://bloodjournal.hematologylibrary.org/content/122/5/641.long

The first 30 patients participated in a cognitive debriefing interview about the MDASI-CML after completing it. Cognitive debriefing ensures that the instrument is complete and is usable by members of the intended population. The debriefing included 7 questions about ease of completion, comprehensibility, acceptability, redundancy, scoring, clarity, and content of the MDASI-CML, scored from 0 (best) to 10 (worst). Subquestions allowed patients to identify items that they found problematic. Further changes to symptom items could be made on the basis of the cognitive debriefing results.
Cognitive debriefing confirmed that participants found that the MDASI-CML included the most important symptoms related to CML and was easy to use and understand.
Our results demonstrated that multiple and frequent symptom assessment may be used to describe differences in treatment-related symptom burden. Our intent was to develop an instrument that could be used to monitor symptom burden associated with therapy for CML across the board.
Most patients with CML receive TKI therapy and remain in chronic phase for years. Many experience few symptoms. However, we identified a significant portion (approximately one-third) of patients who experience moderate-to-severe levels of symptoms consistently over a year, including fatigue, drowsiness, disturbed sleep, muscle soreness and cramping, and difficulty remembering as the most severe symptoms. Pain also persisted over time. It is likely that these symptoms are treatment-related because >50% of our sample had complete or major molecular remission. However, the physiological mechanism behind these symptoms is unknown.
The stability and chronicity of these symptoms is especially troubling, as even a mild symptom that persists for years can become problematic. Moderate-to-severe symptoms that are present for years can profoundly affect patients’ functional status and QOL.
my bolding.
 
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Ember

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So, I am not one to reject anyone for being a psychologist or even a CBT expert or psychiatrist, as some advocates are. Though I certainly think no psychiatrists should be on any panel for our disease unless they are Ellie Stein!
Would the IOM consider a Canadian expert such as Dr. Stein? (Dr. Broderick, by the way, doesn't belong on your "Psychiatry/Psychology" list.)
 
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justinreilly

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@Ember, forgot about Dr. Stein.

I was thinking that about Broderick, but PANDORA put him under there so i just assumed, but i should know better than to assume with PANDORA, my bad.

Any other suggestions of good doctors for the panel that I didn't mention, other than Patricia Fennell for psychology? Couldn't think of endocrinologists or cardiologists especially. I wrote an email to IoM adding her on.