“Grey” Information about ME/CFS Part 2: 1991 – 1993
Compiled by Margaret Williams 5th May 2011:
Part 1 of these extracts from the grey literature on ME/CFS (1956 – 1990) can be seen at: http://www.meactionuk.org.uk/Grey-Information-on-ME-CFS.htm
1991: The Spring 1991 issue of The CFIDS Chronicle was a Conference Issue reporting on the CFIDS Association of America Research Conference held on 17th-18th November 1990 at Charlotte, North Carolina. Amongst the notable presentations were the following:
Marc Iverson, President of the CFIDS Association, said in his Introductory Remarks:
“The impact of this disease can be swift and relentless….I have never known a person with full-blown CFIDS who has not considered suicide at some point or points in his or her illness….The physical impact is often absolutely devastating. Pain, weakness, exhaustion, dizziness and more than another dozen other symptoms commonly occur….This intellectual impairment is truly bizarre… we have trouble finding words or our way home….Profoundly debilitated, intellectually compromised, unable to emerge from the haze, patients drop from sight….the things that matter to them – relationships, jobs, incomes, homes, families – slip through their fingers”.
Dr Paul Cheney (speaking about The Clinical and Epidemiological Features of CFIDS) said:
“Early in the course…these patients exhibit disturbances in balance. You can perform simple neurologic tests in the clinic – Romberg and Tandem Stance. Patients will exhibit difficulties, even athletic individuals, and they’ll be quite surprised at how they can’t seem to stand up… if, in fact, they do not fall over”.
Dr Denis Wakefield (an immunopathologist from Australia) said:
“I do not think that we should blindly accept the CDC criteria for the diagnosis of this disease….Last year we published, in the Australian Medical Journal, a comprehensive study summarising the immunological abnormalities found in 100 CFS patients compared with age-and sex-matched controls. This group of patients had significant lymphopenia, which occurred in both the helper and suppressor T-cell subsets. They also had increased HLA DR antigen expression on the peripheral blood mononuclear cells….The primary reason your HLA DR antigen rises is because of interferon….The major conclusion from this study is that the abnormalities that we have observed in the T-cell mediated immunity in people with CFS are not attributable to depression…most of our studies now indicate that the site of pathology in this disease must be within the central nervous system”.