You state that petitions should be short and simple - I think this petition is exactly that.
There is too much misleading information in the petition, which will send red flags to the NIH. Here is short and to the point :
We demand the US National Institutes of Health direct all relevant subsidiary funding bodies to require the latest and most up to date research definition for Myalgic Encephalomyelitis in any grant proposal, which is the International Consensus Criteria. (Ref)
Why does any agency of the US government that is giving grants for a medical condition allow out of date, obsolete, or non-research definitions into a medical condition, in this case Myalgic Encephalomyelitis? This is bad medical and research practice and needs to be urgently addressed.
When that is done you send another simple petition, so there is a campaign of simple petitions, each one brief and to
one single point. If that point cannot be succinct, no more than a few sentences, and justified with facts not assertions, the petition should not be made.
For example, let me take the most problematic paragraph, and break it down -
In an attempt to mystify and marginalize this severely debilitating disease, government health agencies have misrepresented ME as part of an ill-defined chronic fatigue syndrome (CFS) (Reeves’, Fukuda, Oxford). The latest attempt at obfuscation by the US Department of Health and Human Services (HHS) has been sponsoring and adopting the recommendations by the Institute of Medicine (IOM) (now called the National Academy of Medicine) to use the name Systemic Exertion Intolerance Disease (SEID) and the IOM/SEID criteria. The IOM/SEID definition does not require any neurological or immune dysfunction symptoms and because of its lack of specificity will include many who do not suffer from ME.
As soon as you cite "attempt to mystify and marginalize" many agency personnel are going to leap to thinking "conspiracy theory". Rather than citing the history of bad decisions and funding choices, which are factual and speak for themselves, its presenting that history as part of a deliberate campaign. I do not doubt that there are many instances of deliberate misrepresentations within the NIH, but its not about the entire NHS. or even entire agencies. The closest to that would be the derogatory satirical letter to the CDC posted on a notice board and documented in Oslers Web. Or the letters between Strauss and others. Or internationally recognised experts walking out of the 1986 CDC committee in disgust.
This is further compounded by citing an "attempt at obfuscation". Its better to stick to the facts. The IOM report is the first large scale evidence based review using a methodology widely accepted within US medicine. It does have major problems, which could be targeted, but citing obfuscation again paints this as a conspiracy theory. Its not a good idea. It sends a message to patients, who are rightly disillusioned or furious at decades of government agency under-achievement, but it sends a message to the bureaucrats that we are just extremist conspiracy theorists and can be safely ignored.
"The IOM/SEID definition does not require any neurological or immune dysfunction symptoms and because of its lack of specificity will include many who do not suffer from ME." The petition cites a lack of neurological and immunological symptoms leading to low specificity. We simply do not know that. Its a risk, not a certainty. Furthermore the evidence based review process led to such claims being excluded as part of the definition, with some caveats ... that is that cognitive dysfunction, unrefreshing sleep, and orthostatic intolerance might be neurological, and that orthostatic intolerance can arise from an immune disorder. I know this review process was flawed, but that is because there is inadequate quality evidence according to modern accepted standards of review. These standards have flaws, but they are the standards we have to acknowledge before we can oppose them. This sentence makes far too many assumptions, and is unlikely to be taken seriously. Its the wrong approach. Instead we could point out that a proper evidence based review is problematic given decades of under-investment into research in this area. So any conclusions based on such a review are at best tentative.
HHS refused the letter from 50 ME experts telling Secretary Sebelius to cancel the IOM contract and to adopt the CCC criteria as they all have in consensus.
This is a very good point, and could have been emphasised more.
In actuality, it is HHS who is lacking evidence as to the efficiency of the IOM criteria.
They do, but they can say the same about ICC. Its not about that in the eyes of bureaucracy, from what I can judge. They will argue that is not their role, that as an agency they got the best review they could according to well established methods. That such methods are typically used on well researched and funded diseases will likely be missed by them.
In medical science its generally considered that consensus criteria are inferior to evidence based criteria, and that biomarker based criteria are the gold standard. We don't have
diagnostic biomarkers, we don't have enough information published to reach a good consensus in a review like the IOM review, and in any case the most recent and up to date research criteria consensus view, the best we have, is the ICC. Consensus criteria like the ICC are about getting us far enough along to develop much more definitive criteria. SEID wont do that. Fukuda wont do that. The CCC is similar to the ICC but older.
There is a sleight of hand in the research discussion here. I am sure they will cite the lack of diagnostic biomarkers, but at the same time will ignore what we are now seeing in the science, the presence of hundreds of pathophysiological markers in every patient if enough of the right tests are run. No diagnostic biomarkers is conflated with no biomarkers in individuals, which is untrue.
The argument for the ICC is very simple. Its the only research definition for ME in the last decade, though I wonder about the revised CCC (2010). I have not looked into that recently. All other definitions are old and based on outdated science, or are not research definitions at all, like SEID. Why would any agency funding medical research allow obsolete or inappropriate research definitions in the studies they are funding?