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 The AAFP has published outdated, inaccurate and incomplete material about ME/CFS as recently as 2012.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