Healthy Debate: Groundbreaking research into ME/CFS a pandemic ‘silver lining’

Groundbreaking research into ME/CFS a pandemic ‘silver lining’

https://healthydebate.ca/2022/12/topic/research-mecfs-pandemic-silver-lining/

 

Interesting!

I haven't read the books so I had no idea that the dementor analogy was flawed.

 

Not quite true. I was diagnosed in 2009 and my doctor (and the others later) never urged me on any treatment such as GET and/or CBT. In fact, in my Province at the time, the President of Collège des médecins du Québec (CMQ) affirmed that the latter was in full agreement with the Canadian Consensus Criteria on ME/CFS (2003). So, a Canadian article making no mention of the CCC (2003), criteria that certainly also influenced Canadian physicians, right ?

 

Me either in, in Canada in 1989. But that was before GET I guess. Unfortunately, I took it on myself to try to exercise my way out of the early stages with now predictable results.

 

Agreed. I was diagnosed in 1991. I was never told to exercise and do CBT. I never heard that this was the official guidance in Canada.

All I was told was that I would recover.

If I recall correctly, an official federal government booklet from about 1989, may have advised a one to three year time frame to recovery.

As well, a couple ME specialists advised about the one to three year time frame.

In my experience ,"CFS" was just considered post-viral fatigue or burnout, or stress at that time. That's how it was portrayed to me.

On my own initiative I did get counseling, including CBT - but not the type used for ME.

The counseling did not cure me.

I also walked, but didn't continually increase this over time. I didn't ignore increases in symptoms due to exertion.

The exercise did not cure me.

ETA: ME started - gradual onset in 1985

 

The dementors were inspired by Rowling’s experience of depression, so it’s particularly unhelpful to liken them to ME, even if the author hadn’t already alienated herself beyond redemption from chronic illness communities. Not a completely unnecessary diversion.

 

I have used that comparison before, but it wasn't about the illness so much as about those who keep us locked in.

I sure hope to see that groundbreaking research one day. I am following everything happening and have yet to see it, but I sure hope it starts soon. I would also like it for people to stop pretending it has, when it hasn't. We have to be realistic about where we are, no more hopium of any kind.

Right now we are promised crumbs and have yet to see it, mostly because the Long Covid crumbs aren't much to look at, so far anyway.