Like almost everyone who has CFIDS, I've been subjected to comments which are, at best, insensitive and thoughtless. Coming from physicians or other health care providers, such comments can be devastating - and can seriously undermine my confidence in that provider's ability to diagnose or treat me effectively. Here's some advice if you know someone who has CFIDS:
Five Things You Should Never Say to Someone with Chronic Fatigue Syndrome
To the above advice I would add this: do not refer to CFIDS as "chronic fatigue." Not ever. Doing so telegraphs that you do not understand the illness and that you do not take it seriously. Use the acronyms CFIDS, ME, or CFS, or say the name: Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, or Chronic Fatigue and Immune Dysfunction Syndrome.
Do not insult your friend or your patient by lumping them with people who are "just tired all the time." That's not what this illness is. Not even close. (Read the quote from Lauren Hillenbrand in the heading of this blog and then read the CFS/ME Overviews section of my previous post, An Emerging Understanding.)
De Meirleir
Dr. Kenny de Meirleir's assertion that he has discovered the "True Nature of ME/CFS" has aroused considerable skepticism. Here are some commentaries:
- The Big Breakthrough (!)(?)
- Testing Prof. Kenny de Meirleir's test
- Comments on Hydrogen Sulfide and the Methlyation Cycle in CFS
Dr. Paul Cheney's announcements in April 2009 have also inspired some responses, particularly regarding his new position on omega-6 and omega-3 oils:
Dr. Cheney Goes His Own Way - Again
Advocacy
And finally, two articles in the realm of advocacy ask why there is so little being done to find the cause(s) of CFS/ME/CFIDS and effective treatments:
CFS Patient Groups Cowed by the CDC? - John Anderson's scathing indictment on the failure of federal programs to address this illness or to even take it seriously. John points out that CFS advocacy groups have consistently failed to confront the government agencies regarding this neglect.
The Why - Hillary Johnson's powerful and moving speech, given at the Invest in M.E. conference in London earlier this year. This is the speech which inspired John Anderson's comments.
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