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Very good these researchers are looking at communication issues in conveying ME symptoms. Diving a bit deeper into this, there is the issue of sorting out, recognizing and naming symptoms. PwME can be so debilitated, they cannot tease out all the symptoms and describe them. An important...

Yes agreed, and we desperately need the record changed!

The authors don't note vehicle accidents as the instigation of Fibromyaligia (FM). I have known three pwFM whose disease started shortly after a car accident. IMO everyone can point to some trauma in their childhood. This doesn't result in FM for everyone.

Cheers!

Cheers!

I had a somewhat similar experience. Many years ago, when at the emergency ward, my treatment for a very real physical problem was derailed for a time. It was starting to look like my physical problem was going to be dismissed, because a relative had recently passed away, and the staff were...

The "News in Brief" gives me hope and awareness. It is so very helpful to have these main items collected, and easy to refer back to. This section is an excellent reference where I can find what's going on with ME. Thank you @Trish and @Kalliope, and all other members who have, and continue...

Excellent read. Wish I could afford copies for some politicians.

Exactly!

With gradual onset ME and multiple confirmed bouts of EBV, I was told I would recover. This advice kept me going. Resting, but not completely. And, working for several years until I became too debilitated. An EBV diagnosis should come with a warning label. It should be taken more seriously...

@Mithriel, thank you for your historical knowledge, and perspective! :)

Over 30 years ago I was diagnosed as having CFS. Very early on, I had no idea this term would be met with such hostility. I've watched this term go from CFS to ME/CFS to ME. (In Canada.)

Thank you!

Excellent article. I noted this author followed up with physicians regarding their failed treatments. I think in a number of cases that's an unusual scenario. Perhaps we would have slightly more progress if these practitioners, of whatever stripe, were more frequently confronted with their...

Hi @strategist I've been wondering when the NIH study would come out. It's the deep-dive one on ME you're talking about, isn't it? It seems to have taken so much longer than planned, but then the Pandemic did mess things up, to say the very least. Do you know when it is slated to come out...

Yes, I would bet some in our community predicted that researchers would move to researching COVID. If they could include pwME as a comparison group that would help.

No, I am thinking the same thing,.

I hadn't thought about the different pay systems per country, as regards driving away patients. In Canada we have "universal health care". I put this in quotation marks because as we know, there is boom all health care for pwME pretty much anywhere. Physicians here are entrepreneurs in private...

Agreed. The better training needed, of course, is the correct biomeducal model of ME. IME unreasonable expectations are somewhat common in medical settings. I've been told not to react to pain when being cut by a scalpel - this with inadequate anesthetic. A similar circumstance has happened to...

Lots here to consider, some of which is: - what triggers stigma? (Othering for sure does) - in this particular case, what are the issues that generate stigma? (Some of the issues are complex symptoms, gender, working age patients, economic status, lack of a solid case definition, lack of...