My comments from this earlier link re historical government expectations of disease duration (my bolding this thread only):
https://www.s4me.info/threads/how-m...in-me-cfs-nacul-et-al-2019.11346/#post-202721
Government language may have improved, but has medical education? No; we have a long way to go.
I think there is a perception that we are a LOT further down the road to proper diagnosis and treatment than what we are seeing on the front lines of patients going to their doctors.
@Colleen Steckel, I agree with your message. Despite new changes at the top of the health care pyramid, medical consults are still fraught with disbelief, dismissal, lack of any knowledge about this devastating disease. I think it was on
Unrest, Dr. Nancy Klimas said we are still graduating medical students without any knowledge of ME (paraphrasing). Granted
Unrest only came out in early 2017. Since then we've had cme programs of various types, as well as more appropriate and informative articles, however, many, if not most physicians have still never heard of ME.
From earlier link as noted above:
Regarding phases of ME ("cfs"), in 1989 Health and Welfare Canada held a workshop, and published the results in 1991.
The introduction says: "The purpose of this meeting is to review what we know about CFS, make recommendations and prepare guidelines concerning the diagnosis and management of CFS, and discuss various approaches for future research."
Of particular interest are pages 59 to 71 of this link.
On page 59 discussion included the issue of clarifying how "chronic psychiatric disease", and "malingering" featured, or did not feature in the Holmes' definition:
http://publications.gc.ca/collections/collection_2016/aspc-phac/H12-21-1-17-S1-eng.pdf
This workshop and the ensuing publication concluded "CFS is a triphasic syndrome: Phase 1 - (lasting 3-6 months), an acute phase of greatest illness. Phase 2 - (lasting 3-24 months), a phase of slow improvement. Phase 3 - stability at an improved functional level usually subjectively less than 100% (no inexorable downhill course)."
Based on the above government information, I was told I would recover in one to three years. I waited, puzzled, and concerned that I didn't seem to be improving, and the three year deadline was fast approaching. Over 30 years on I know this information is at best extremely optimistic for many pwME. We are still waiting for more definitive information about the natural course of this disease.
In August 2009, CFIDS of America reported on a survey of 1,784 respondents: " Only 4.4% have been ill less than two years; 62.1% have been ill more than 10 years....63.3% are fully or partially disabled or retired from work..."
Several other questions including work, full or part-time, receipt of disability income, number of medical consults etc. were also included in the survey.
I have been unable to find the link to the above. I have a photocopy of the info without a link noted. It would be interesting to see more survey results like this one.
The gap between what pwME experience and what policy and decision makers portray is very difficult to describe in positive terms.
However, thirty years on we finally have some good news in Canada.
I hope this more enlightened policy catches on in the UK and elsewhere!
ETA: Also, looking back, by the time I was told I would recover in one to three years, I had been very much worsening for two years, and had had a total of about 6 years of gradual onset with new and increasing health issues added on over time.
Initially, my gradual onset could have been seen as mild ME. With continuing to work, and press on as usual, which included lots of exercise, the ME worsened.
ETA #2: quotation marks added.
Time for more surveys like the 2009 one from CFIDS of America? Do we have any?
