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@Laurie P and @cassava7 Yes, agreed. Receiving benefits also makes the situation more real and official. It may put a final-like stamp on one's health, and life. It indicates others confirm and agree the pwME is quite unwell, and not able to work for at least a significant period of time. All...

This looks promising to me too. But, I don't have advanced science training. Interesting that saliva was tested. And, the authors say research has been looking at the wrong tissues. Surprising, but also, maybe not, that saliva has not been looked at before. I don't know what would make the...

Looks like a number in the medical profession like to work with patients who are Young, Attractive, Verbal, Intelligent, and Successful. Yavis Syndrome. Noted many years ago in connection with the type of client psychotherapists preferred to work with.

Yes, they get visits from drug reps, and samples they hand out to patients. Not just willy-nilly though. They prescribe the drug. Drug reps and doctors have the same protocol in Canada.

Good to see this long-awaited survey. Perhaps learning that counting the persons affected is a good idea. Seriously paying attention to, and respectfully considering and counting pwME took decades in Canada.

Contradictory, that pwME were, and are disallowed from donating blood due to potential harm it may cause the pwME, but at the same time this illness has, and continues to be viewed in some quarters as psychological.

:thumbup: I think when someone is diagnosed may play a part in whether those close to the pwME are supportive. If the diagnosis was made decades ago, when the BPS model was most strong, then support was maybe more limited. Now that some government departments are on board, at least on the...

Thank you @Jonathan Edwards, I appreciate your assessment of the article. :) Yes, now they are viewed as separate diseases, but several years ago, some in medicine called them "cousin illesses", or cousin syndromes as they were seen at that time. Interesting that in some closely related...

Friends and family, if they haven't already come across the stigmatizing propaganda regarding ME, very quickly pick up on this when one of their own is diagnosed with ME. From there the disbelief, lack of support and isolation begin. Medicine and governments play a notable role in this...

Interesting that Canadian Blood Services disallows blood donations from people with "Chronic Fatigue Syndrome", as it's labeled by CBS, but allows donations from people with Fibromyaligia. Who is right? Are these two separate diseases, or are they one and the same, just varied manifestations?

"...influence illness outcomes... Comments like this seem to imply that ME ahem...."cfs" is short-lived. Not so, from experts' studies, and many with lived experience. Reducing stress, yeah that's good. But, it won't cure ME. Or, "cfs".

:thumbup: I wish this info had been available when I was first diagnosed over 3 decades ago. It would have saved some concern, and mistreatment. Of course ME research was extremely sparse then, and only marginally less so now.

@Peter Trewhitt I've had a similar experience and results when avoiding naps, and trying to as you say, fight to sleep 7 or 8 hours straight. I feel worse. However, 7 or 8 hours of consecutive sleep per night appears to be the rule promoted by sleep experts. And, it seems at least according...

Yep. :thumbup:

Good point, @Hutan. Grieving losses in chronic illness is most likely accepted and included in counselling protocols. However, because ME has long been considered a made up condition, practitioners may not acknowledge pwME have any losses to grieve. In fact they may think we have gained much...

Yes, that's my understanding as well. ETA: spelling correction

My head feels much clearer when I lay down. For some years, my OI was quite bad even when supine. For me, POTS is not just part of PEM. I have it everyday, much, if not all of the day. I wonder if PEM for me is often partly caused by being upright for a few hours. For example, a fairly quiet...

Important note in this study about what neuroimaging does: "collect data only in the supine or seated positions." Other medical testing such as an ECG or an Echo, never pick up POTS, or OH. IME, repeated comments about extra fast or strange heart beats did not trigger any testing relevant...

Thanks @Sly Saint Been meaning to post about this book. I'm getting mine from my local bookstore. Hoping it will generate some local interest.

Last sentence from Results: "....an estimated 15.1% ... continued to experience symptoms at 12 months." I've seen Canadian reports noting about 40 to 60% of citizens have had COVID. We have approximately 38 million in Canada. On the low end (40%), that's 2,280,000 with LC. ETA: 60% gives us...