My thanks to advocate Eileen Holderman for her consultation on this blog post.
“Hypocrites get offended by the truth.”
― Jess C. Scott
On May 17, 2018, I wrote a blog about the actions by the organizations MEAction, Solve ME/CFS, and MassCFIDS to introduce a Senate resolution ( S.Res.508 – dated May 15, 2018) for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. ME advocates and the organization MEadvocacy strongly objected to the deceitful inclusion, by the organizations mentioned above, of the Institute of Medicine (IOM) recommendations into the Senate Resolution.
The three organizations purportedly representing the ME community are keenly aware that a significant segment of the Myalgic Encephalomyelitis (ME) community strongly disapprove of the IOM recommendations (see details of HHS’ charge to IOM and the resulting recommendations here) yet, chose to inject the IOM recommendations in the Senate Resolution.
In response to multiple objections in June 2018, the three organizations published a clarifying letter to the community about the “confusion” regarding the language in the Senate Resolution. In their letter, they claim that “one line was inadvertently changed” which became a cause of “confusion and upset” in the community. Their intent, they explain, was to get Senators on record as:
“1) supporting the IOM’s finding that ME/CFS is a devastating, biological, multi-system disease, and 2) supporting the IOM’s clear call to federal agencies to increase biomedical research.”
Language in official government documents are precise and are read at face value. The intent in the minds of those who pen the wording is inconsequential. Congressional representatives, politicians and everyone reading the document will come to the false understanding that the IOM Report is commendable and its recommendations are admirable.
The two points of “intention” mentioned above were never part of the recommendations of the IOM Report (as seen here). Additionally, to recommend an entire report with the extrapolating of one specific sentence in a 282-page document is inane, especially, when the resulting recommendations are inaccurate and damaging.
The IOM Report was not charged with recommendations regarding research. It was HHS’ P2P work which produced their own report on the needs of research in ‘ME/CFS’ – not the IOM. The IOM’s charge was limited to the diagnosis of the disease.
The Solve ME/CFS/MEAction/MassCFIDS letter further states:
“Our intent was not to support the IOM’s suggested name change to SEID or the IOM diagnostic criteria“
The name change to SEID and the new IOM diagnostic criteria were part of the actual recommendations of the IOM Report. How are we to believe that organizations who claim to represent the community of people with ME (pwME) get that most important fact wrong?
It is hypocritical for these organizations to state that they are not supporting the IOM diagnostic criteria when in fact, they have been and are continuing to aid the Centers for Disease Control and Prevention (CDC) in adopting, implementing, educating and disseminating the IOM diagnostic criteria!
In conclusion, the three organizations want to be “extra clear”:
“Neither our advocates, our organization, nor members of the Senate are pushing for the NIH to rename the disease nor to adopt the diagnostic criteria.”
Do you see what they did here? Reread it. They are saying that they are not pushing the NIH …(NIH the research agency of HHS) to adopt diagnostic criteria! It is the CDC who forced the IOM/SEID criteria on us, despite worldwide protests against it. And it is the CDC who have adopted, implemented and disseminated the IOM/SEID diagnostic criteria – not the NIH.
ME advocates reject the IOM recommendations and therefore reject the entire report the work was based on. In its opening paragraph, the IOM authors stated: “Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious debilitating conditions that impose a burden of illness on millions of people in the United States and around the World.” They qualified that ME is not CFS. Later in the report, the authors stated: “The Committee deemed the term “myalgic encephalomyelitis,” although commonly endorsed by patients and advocates, to be inappropriate because of the general lack of evidence of brain inflammation in ME/CFS patients, as well as the less prominent role of myalgia in these patients.” The IOM report distinguished that the entity they were defining was not ME.
The rebranding attempt with the name SEID was ill-received by the majority of the community, and those who have published works vetting the IOM/SEID criteria and comparing to past definitions have agreed that it is a weak, overly broad criteria – even more general than Fukuda and not descriptive of ME (see Jerrold Spinhirne’s Note here).
The three organizations who have elected themselves to represent #pwME – in actuality are not. If they were serving pwME, they would push for the criteria authored by ME experts – the 2011 International Consensus Criteria (ICC) for diagnosis and research – not the vague ‘fatigue’ IOM/SEID definition.
It is hypocritical to brand yourself as representing one disease, yet push and aid for adopting a different entity. Long-standing ME advocates and pwME understand the distinction but, those who are newer to the community do not – and this deception is grossly misleading and harmful. The three organizations are in actuality aiding the CDC by serving on workgroups to facilitate the adoption, dissemination, and education of the IOM/SEID diagnostic criteria – yet they state they are not supporting it.
The language used by MEAction Network, Solve ME/CFS Initiative and MassCFIDS/ME & FM Association in their letter to the community is what we have become accustomed to from the government health agencies for three decades with their deliberate deception and harm inflicted on the ME community. The fact that these three organizations who purport to represent the ME community are employing the same government tactics is appalling and harmful.
The ME community has experienced the disastrous ill-effects of using obfuscating, ‘fatigue’ based criteria for more than three decades. We will not stand by in silence for more of the same.