Agree that Malaise is a poor descriptor for a general exacerbation of any and all symptoms but the word Lassitude was once in common use describing similar physical states experienced by multiple sclerosis patients. An adjustment in the universal translator has relegated a word that describes...
Looking at the number of names that have reputations at risk of serious damage a quotation comes to mind that may explain the silence.
"We must, indeed, all hang together or, most assuredly, we shall all hang separately." - Benjamin Franklin
Chimes with a Trish Greenhalgh tweet
Dr - Do not mistake your 1hr google search with my 6 years at medical school
Patient - Do not mistake your 1hr lecture on my condition with my 20 years of living with it
No serious answer from the Professor or his twitter troll ally at cfs research are they just searching for evidence of abusive patients when unable to substantiate claims made at the FOI tribunal.
The SMC do not have a very good history with such correspondence unfortunately.
http://www.virology.ws/2017/12/18/trial-by-error-my-questions-for-the-science-media-centre/
When "mindfulness" was the non judgemental awareness of the present moment can the bastardised version touted be considered the same thing anymore than supportive CBT be considered the equivalent of directive CBT
Using the official feedback system https://www.england.nhs.uk/participation/get-involved/how/feedback/ leaves less scope for deletion of unfavourable reports.
It was also some time ago that Action for ME supported the PACE Trial but that has not stopped it's portrayal as having the support of the largest charity in the field.
Eileen Holderman - In 3hour convo w Dr. Unger @CDCgov in Washington, DC, she expressed 2 me bewilderment @ advocate community outrage over Toolkit [touting GET+CBT] bc "CFIDS [now Solve (SMCI)] wrote it."
Only using it once a day on empty stomach (morning) as no side effects doing this which is always a good thing when finding what the system will tolerate.
Angiogram was counted as just another routine investigation in the same way as getting an ultrasound while attempting to find an explanation for flipped T waves on ECG on Acetylcholine Provocation test. All very routine and taken from one test to another so I could return home the same day and...
Had an angiogram and the only real problem was keeping still while it was carried out as normally I need some movement that eases blood pooling / cramps / twitches jumps etc
Better than Yahoo news article that explains CBT and GET as recommended treatments
https://uk.news.yahoo.com/symptoms-diagnosis-treatment-070637371.html
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