taniaaust1
Senior Member
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Kina and I have systematically reviewed all the posts made by members on this thread and distilled those comments down into the following key points, each of which have been made by several members (we've noted the post numbers in this thread along with each point). I think they all fall together into a consistent theme for the presentation, and I am very keen that our presentation should be representative of the feedback given by members here, so the following is my proposed outline for our presentation:
The population of severely ill and disabled ME patients should be separated out from the broad fatigue-based definitions, using a definition at least as 'strict' as the CCC or ICC.
In addition to the above points, there also seems to be a strong consensus that we should end with some kind of brief statement noting the serious and widespread concerns amongst the patient and expert community about the nature of the IOM contract process. My personal thoughts on this are that it might be best framed in terms of suggesting what the panel members should keep in mind as a consequence of patients' material concerns about the contract (the panelists didn't form the contract, and some opposed it, so asking them to stop it would be pointless, but highlighting specifically what the key concerns were can be relevant to their deliberations).
- The criteria used so far (like Fukuda, Reeves) have been so broad as to make the research evidence based on those criteria largely useless: we argue for the recognition of an ME definition, nothing less than the CCC or ICC (as an interim pending further research, and ultimately, ideally, a tighter definition than even the ICC). The definition should include PEM/PENE (operationalised by CPET testing), neurological and immune dysfunction, with testing for known abnormalities mandatory. (Firestormm 4, 50, Slayadragon 5, Daisybell 16, taniaaust 20, ecoclimber 44, Roseblossom 46, 51, Ember 56, 82, Nielk 76)
- ME should be separated out from Chronic Fatigue and 'CFS'. Chronic Fatigue, CFS and ME are separate entities. An ME definition should be based on test abnormalities. CFS should be dropped. Chronic Fatigue isn't relevant to ME. (taniaaust 20,22, bob 42, Lnester7 45, Beaker 71, 72, Nielk 76)
- The illness we are talking about is not about fatigue. This illness is also not about depression, deconditioning, childhood abuse, somatization, personality disorder, laziness, malingering, hypochondria, or unwellness. (SOC 6, Nielk 8, Sparrow 10, bob 42, ecoclimber 44, Lnester7 45)
- The panelists need to understand how severe the disease can be, and have a definition focusing on the core of the most severely affected. The disease we are talking about is a complex, serious, debilitating, multi system disease which leaves its patients disabled. There is a wide variety of symptoms. Half of patients can't work and a quarter are left bedbound. Panelists need to recognise the varying severities and the impact on patients' lives of the various disability levels. (Sparrow 10, 104, Firestormm 21, Beaker 49, Nielk 76, Ritto 112)
- Our presentation should challenge the concept that ME/CFS is a psychological or psychogenic condition and call for such research to be disregarded in relation to the EBM base for ME. We could show examples of past illnesses once thought psychiatric and now known to be physical (eg Ulcers/H. pylori infection, Multiple Sclerosis, Diabetes). Research which describes a putative 'functional disorder' should be ignored and dismissed in relation to ME. (A.B. 34, bob 42, ecoclimber 44, Alex 52)
For example: a charge to the panel to recognize that many in the community will not be participating in this process and they oppose the contract because they believe that any definition should be determined by ME/CFS experts, and that this has already been done in the form of the CCC and ICC, and that therefore the panel should make extra effort to consider this viewpoint, try to consult as much as possible with the community and especially with the experts, and defer to their judgment in areas where they are uncertain and lacking the necessary experience to fully appreciate the complexity of the issues involved.
A few other good points were also made on the thread which would be good to include somewhere in our presentation if possible:
I'd also like to suggest something like the following, in view of the difficulty that we and others have faced in preparing our presentation at such short notice:
- Highlight the abysmal lack of research funding. (Alex 52)
- Highlight that PEM affects cognitive as well as physical function. (snowdrop 33)
- Separate out the pediatric definition. (Beaker 49)
- The panelists should take Leonard Jason's papers into account - including his recent paper which suggests assessing symptoms by severity (Firestormm 30)
The above needs to be formed into a presentation (with powerpoint slides) by Thursday, so that those slides can appear in the printed materials for attendees. We should also submit supporting material, and I propose that we submit a list of all the links and resources suggested in this thread for panelists to read, including Bob's suggestion of pointing the panelists at films such as Voices from the Shadows, and urge the panelists that patients from Phoenix Rising implore them to be aware of these materials.
- Our presentation could emphasise (perhaps at the start) that a presentation lasting 5-7 minutes is nowhere near sufficient time for us to provide the feedback we want to provide. So perhaps one main point could be: please ask us again, give us more opportunity for feedback, and keep on asking us throughout the process. Invite us for further discussions with the panel, later in the process.
This task has come at a very busy time for Phoenix Rising, and we were only notified on Dec 26th, so with this latest setback we're clearly running late and It's obviously going to be a challenge to get the presentation, supporting materials, and presenter ready within the next 24-36 hours or so. So if anybody is able to help out with this job, please contact me, and I'd ask anybody else with any other thoughts about the presentation to add to this thread to try to make them as sharp and specific as possible: precise text, references, quotes, images etc etc are all likely to be useful in preparing our presentation.
Thanks,
Mark
Mark and Kina.. I think you both have done an excellent job getting that all together.
I myself agree with everything there said there. (the only issue I had with it was the same as Nielk and some others would too which Ive already commented on). Anyway.. just wanted to say I think you both have done a great job at getting together the points important to the community (no easy feat)