Current list, with alternatives to decide on:
1a. An independent panel of Diagnostic experts will be created to write a 100% complete differential diagnosis list of all other diseases that can cause the symptoms of ME and CFS, they will write a step by step easy to follow guide on how to rule out all the other diseases and all the tests that are needed to do this.
Drs Byron Hyde and Dr Shirwan A Mirza because of their track record in finding the misdiagnosed patients in the CFS group must be included in this panel either directly or as consultants.
1b. It will then become compulsory for all patients who have suspected CFS or ME or have already been diagnosed with CFS or ME, to have the testing recommended in the guide that is created by this independent panel.
Object: No thanks. Who pays for this "compulsory testing", and why would I want to subject myself to that? Over 20 years I've been tested, retested, and then tested again. I'm waiting for a biomarker before I submit to more tests.
2a. A new definition will be created, that will be based on independently replicated science, the new definition will be based on the patients having had all the testing to rule out all other diseases, using the differential diagnosis list and testing requirements that will have been created when article 1a has been accomplished.
A review of the medical literature must be done, to compile a list of all physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH etc, etc. Tests for all anomalies will be performed in a replicated manner on all the patients in all the groups. From this information a new definition will be written, or two definitions, if it found to be two different illnesses. And a new name/names for the illness/illnesses will then be created based on the scientific findings.
2b. Adequate Funding will then be provided to further research patients that fit the definition/definitions created by this process to find diagnostic tests, causes and treatments.
2c. The CFSAC and the Patient Community will be regularly updated on the progress of this project and the details of it.
Object: No thanks. Again, after 20 years of hashing and rehashing the name, I could care less what they call it. CFS is a diagnosis here in the US that is gaining some recognition and folks are getting social security and medical benefits based on that diagnosis. The name sucks, but until there's a biomarker or some breakthrough research/treatment, it's the very least of our problems. Again with the mandatory testing? A very nice consensus paper was written by a world-wide group of specialists, research and clinical, summarizing the physical findings in ME/CFS and recommending a name change to ME. Do we think we can do better than that. Do we have to reinvent the wheel. I would suggest that paper (which I'm too pooped to look for now) be used as a starting point for these discussions.
3a. All CFS and ME patients in the USA will be officially recognized as having a serious Physical illness until such time as the science in sections 2a and 2b has been done and the answer to what this illness/illnesses is has been found.
3b All US CFS and ME patients will be given the legal, medical and insurance rights that other patients with a serious Physical illness have.
This is already the case. In order to gain benefits, you have to show you are unable to work no matter what your illness. When I was applying for Social Security back in the 90s, people with AIDS were being denied. Regardless of your diagnosis, you may or may not be able to work and that's what has to be shown. It's not easy for anyone whether their diagnosis is considered serious physical or mental illness.
3c. The CDC will write on its website that CFS and ME are serious physical illness, until such time as the science in articles 2a and 2b has been done.
4. 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.
Why? I don't get the debate around this. Again, when biomarkers are found, whether there are distinct disease entities or not will be shown. I don't want to spend time on this.
Alternative 4:
4i. That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS,” the CDC should recognize the ME-ICC and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing ME (ICC/CCC) from CFS (Reeves, Fukuda).
5. More research funding for the biomedical model of illness, using CCC and ICC alongside Fukuda for all research, until such time as the new definition based on replicated science is completed.
Alternative 5:
5i. More research funding for the biomedical model of illness, using CCC and ICC for all research, until such time as a new definition based on replicated science is created.
6. Research trials be carried out into Rituximab, and related pharmaceuticals, with these researchers communicating with Drs Fluge and Mella to help coordinate the research and provide details of how they select patients for trials.
I think any recommendation that dictates specific researchers is not going to gain consensus or carry any weight. Jennifer would know the answer to that question. But it's my thought that this is outside the charter of the CFSAC.
7. CBT can be an optional therapy for CFS patients, to help with the emotional issues of having a physical illness, and GET should be removed from CDC literature, toolkit and website.
Alternative 7:
7i. CBT to assist coping can be an optional therapy for CFS patients but not for the purpose of modifying hypothesized dysfunctional illness beliefs, and GET should be removed from CDC literature, toolkit and website.
The most strongly advanced recommendation at the CFSAC meeting was to REMOVE the toolkit and widely distribute the primer. We should support that recommendation.
8. 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.
(should we be more specific about this and provide specific information about what we want removing, or at least examples?)
Alternative 8:
8i. "The CDC should remove all information from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, that is based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS."
(should we be more specific about this and provide specific information about what we want removing, or at least examples?)
9. 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), and the requests we outline, the CFSAC should re-issue.
Alternative 9:
9i. 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 ME/CFS policy in a clear and concise manner.
9ii. 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), and the requests we outline, the CFSAC should re-issue recommendations that address current priorities in ME/CFS policy in a clear and concise manner.