This is where we are up to at the moment, with some items currently in ongoing discussion, and nearly all items have been opposed by rlc in an ongoing discussion. After we have rlc's (succinct) feedback, we'll see if we are able to work out any wording that enables us to include any of these items, alongside rlc's wishes. So I'd like to try to keep both rlc, and those with other points of view, happy at the same time, with careful use of wording and phrasing. I don't know if that will be possible. Beyond that, we will have to discuss which of the items should be prioritised to go forwards. But many of them might change drastically and considerably after we've attempted to reword them anyway. ________________________________________________________________________ Please comment on the following list of suggestions. We need to know if anyone has opposition to any of the specific ideas, or wording. Please state whether you oppose the idea, or wording, and why. And anyone should please present alternative, prefered, or improved wording for any of the points. If there is opposition to any items, then we scrub them if we can't find alternative wording that everyone can agree on. Here is the list of suggestions extracted from the thread: 1. Promotion of CBT and GET as therapies for CFS patients should be removed from CDC literature, toolkit and website. 2. The IACFS/ME toolkit should be promoted and adopted by the CDC. http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf Suggestion already made at last meeting. Similar suggestions but with an alternative approach could be made here? (e.g. "The CDC should create a toolkit with the IACFS/ME's toolkit as a reference.) 3. [none] [sorry - mistake] 4. The CCC and ICC should be used alongside Fukuda for all future government-funded research. Ask the CFSAC to recommend that either the CCC or ICC, or both, are always used in government funded research into CFS or ME/CFS or ME. 5. More research funding for the biomedical model of illness, using CCC and ICC for all research. 6. Research trials be carried out into Rituximab, and related pharmaceuticals, using CCC and ICC cohorts. 7. CDC creates a comprehensive list of differential diagnoses, and the tests needed, and makes this compulsory for all potential CFS patients, and all CFS patients, to receive. As per the IACFS/ME toolkit? http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf As per Hummingbird? http://www.hfme.org/misdiagnosis.htm#397044121 8. A series of state-of-the-art specialist ME centres are set up across the country, which offer biomedical investigations and treatment, and do not follow the biopsycosocial model of illness, and which do not offer GET or CBT. A number of objections to this item. 9. The CDC should stop using the 'empirical' definition for research. Already recommended previously 10. The CDC should remove all information from their website based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS. 11. Give CFSAC power to educate physicians, schools, social services, and the public itself, and the funding to issue press releases. 12. Invest research funds into finding a biomarker or biomarkers for ME. This has already been recommended. But can we suggest a re-recommendation with research using CCC and ICC? Relating to the new CDC diagnostic criteria: 13. The CDC should develop a definition based on the biomedical model of illness. That the CDC creates a meaningful criteria based on patients with a biomedical illness, and to exclude pyschological or psychiatric illnesses from the definition. 14. For the CDC to engage with the patient community when creating its new diagnostic criteria. 15. That the new CDC criteria be subsetted in order to create more selective cohorts, including a cohort identical or similar to the ICC. 16. Ask the CFSAC to ask the CDC for exact details of their diagnostic criteria project. Also, one other thing, which I think would be worth asking the CFSAC, relating to the CFSAC, which I want to suggest: 17. The CFSAC should review all their previous recommendations for clarity, utility, redundancy, and applicability. Based on this review, and a review of responses received from the Assistant Secretary and Secretary (if any), the CFSAC should re-issue recommendations that address current priorities in CFS policy in a clear and concise manner. Edit: Additional suggestions added: 18. CFSAC should recommend that the CDC add myalgic encephalomyelitis (ME), as defined by the ME-ICC and classified by the WHO, to its list of diseases. Needs rewording.