Margaret Williams: Grey Information about ME/CFS Part 3

“Grey” Information about ME/CFS   Part 3:   1994

Margaret Williams               November 2011

Part 1 of these extracts from the grey literature on ME/CFS from 1956 – 1990 can be seen at:

http://www.meactionuk.org.uk/Grey-information-on-ME-CFS.htm

Part 2 of these extracts from 1991 – 1993 can be seen at:

http://www.meactionuk.org.uk/Grey-Information-Part-2.htm

1994:  In its issue of Winter 1994 (ie. early 1994), the CFIDS Chronicle reported on meetings in September 1993 at the CDC and on a two-day workshop held in November 1993 at the NIH on the clinical management of ME/CFS.  Dr Dedra Buchwald listed commonly reported symptoms not included in the case definition, notably shortness of breath, unsteadiness, morning stiffness, blurred vision and dizziness, and she noted the presence of multiple chemical sensitivity.  She stated that “improvement may represent an accommodation of limitations rather than a disappearance of symptoms”. Dr Anthony Komaroff provided a review of the respiratory, neurological, rheumatic and gastro-intestinal symptoms of ME/CFS, and emphasised that he did not find that ME/CFS patients over-report symptoms that are not common to the illness. Dr Jonathan Rest reminded clinicians that patients are usually more sick than they appear. Dr Paul Goodnick noted that CFS patients go to great lengths to help themselves, unlike patients with classic depression, and made an appeal to change the name of the disease, stating that this single act would greatly enhance physicians’ understanding of the seriousness of the illness. Seemingly dismissive of the biomedical evidence of expert clinicians, psychiatrist Dr Michael Sharpe contended (i) that he could potentially cure CFS with CBT; (ii) that factors correlating with worsening of the illness include a belief that it is caused by a viral infection and by belonging to a self-help group, and (iii) that those who do not improve with CBT may have a personality disorder.  Dr Phillip Peterson questioned the merit of trying to change patients’ beliefs about the disease when the mechanisms of it were not yet known, saying he had found no other disease with such global immune disturbance.

1994:  On 14^th May 1994 The New Scientist published an article by Renee Twombly (The trouble with ME: New Scientist, Volume 142, No: 1925) drawing attention to a forthcoming conference on ME/CFS to be held in Dublin that month and noting that it was one of the few conferences on ME/CFS to be held outside the US.  Twombly quoted Peter Behan, Professor of Clinical Neurology at the University of Glasgow: “Behan says that several papers to be presented at the conference offer new evidence that the illness is due to factors that upset a cell’s production of energy…. ‘All this evidence tells us that the mitochondria are sick in the CFS patients we studied’, Behan explains….Behan believes that more support for his theory is provided by work at the University of Leeds, which suggests that muscle cells in patients with CFS contain inadequate supplies of the ions they ...Read more>>