Don’t forget Dr. De Meirleir
Don't forget to invite Dr. Kenny De Meirleir. He sometimes calls ME/CFS, for example, “AIDS-II.” This name or something equivalent could be a good candidate [for the name change]. Or Acquired (not at birth) Immune Dysfunction (principle cause of many other problems) Syndrome. – Frank
Rich Carson responds: Dr. Kenny De Meirleir would easily be on the list if he were in the USA. He is on ProHealth’s advisory committee and we hold him in very high esteem – as do CFS patients everywhere. However, we are making the committee a USA contingent, because this is an acute problem for us, and these scientists will help us with our policy. Watch for the formation of an international committee later to help guide us through the process. Dr. David Bell signed on to the committee last week, and I’ll bet you can guess the next two or three members – who have yet to be invited. The name change is virtually a done deal as far as I am concerned. Just watch (and back us). Thanks for your support and I like the way you think.
Let the science lead us
[Forming a name change advisory committee] is a total waste of time, unless they all use the time to fine-tune the 2003 ME/CFS Canadian Criteria*… If the authors [of that document], and more, wish to reconvene and work further to turn their 109-page document into research criteria for ME/CFS, that would be a good use of their time and talents, and would benefit all patients very well… Let the science lead us. That is what will give us all what we need – from diagnostic markers to definitive tests that result from understanding the full etiology, etc. It may or may not also result in a new name, at that time. – LW
* Canadian Clinical Working Case Definition, Diagnostic and Working Protocols for ME/CFS.
Patient's long experience with Dr. Lapp "says it all"
I am thrilled to hear that Dr. Charles Lapp will be on the "new name dream team." He has been my doctor since 1995 (when I was 43), and has been there for me throughout this CFIDS nightmare.
Dr. Lapp is the most caring and knowledgeable physician I have ever known – and I have known quite a few! Although he is involved in cutting edge research, two extremely active practices in two different cities, and countless advisory roles, he never makes a patient feel rushed and always provides remedies to address any symptoms the patient experiences. One testimony is the way he makes sure you leave with a typed (by him on a laptop) summary of the visit, including all suggestions to deal with symptoms.
He also does not use the term "chronic fatigue" – for the very reason we are so compelled to change the name – it is the ultimate slap in the face to a CFIDS patient. I look forward to reading about the progress on the name change and know in my heart that the dream team will make it happen! – Tim
Remember who chose this deplorable name
Your recent interesting e-newsletter mentions concern about the [perceived] legitimacy of a new name for CFS chosen by patients and not medical professionals. I agree that this is important, but I have to point out that the deplorable – and by any measure indefensible – name "Chronic Fatigue Syndrome" was chosen by our Federal Health Agencies (that is, medical professionals). – Amy
Without better recognition of CFS in the medical community, we're on our own
I have been sick for more than 14 years. The doctors I've been to don't know anything. One told me to do anything I could to make myself feel better. The message was, "You're on your own." It's just a relief to know that somebody out there is doing something to give CFS better recognition. – Lesa
We also need famous spokespersons for CFS
A new name will definitely help people and doctors accept that CFS/ME is a serious condition. However, it seems to me that regular people do not really accept any condition as being real and legitimate until someone famous talks about it. Someone who is easily recognized and respected. Think of Jerry Lewis, Elizabeth Taylor, Christopher Reeves, Michael J. Fox. They have raised millions and millions (probably billions) of dollars for medical research.
If we can gather leading physicians for a single purpose, why can't we gather together a "dream team" of famous, highly-recognized athletes and entertainers to legitimize, promote, and fund-raise for CFS? – Carron