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@Arvo I too have thought about the BPS avoidance of "treating" pw severe ME. Perhaps this avoidance is due to the belief this model would harm the severely affected. In which case, they are not confident their "treatment" is entirely safe. Or, is it more a case of optics. Not looking good...

Excellent points @Invisible Woman And for the love of .... surely we have the right to be angry. What about other groups who have been stigmatized for years? Lately their right to be angry, and protest has been recognized, and applauded. At least by non-knuckle-dragging citizens who are...

Absolutely. The IOM report was commissioned by the NIH, if I recall correctly. And, yes the IOM/NAM is highly respected.

Good idea. As well, I recall there was a thread here about patterns of behaviour for this group. This sounds like a good example.

Brain scanning able to detect even low level inflammation, something that seems elusive to pin down in ME. it would be interesting if some studies included people with Long COVID, another group with ME, plus healthy controls.

Excellent idea!

Way to go Millions Missing Canada! Thank you! :thumbup::thumbup::thumbup:

Litigation fall out, does seem a possibility. However, governments will often back the establishment. Despite this potential David and Goliath situation, I think litigation may be plan, once the dust settles one way or the other.....

Me neither! Interesting point, with the draft guidelines out there, indicating the facts that GET and CBT therapies are low quality for ME, then it's sort of a done deal, but also not a done deal. The proof of low quality/very low quality is out there, but the final step, in this case...

Thank you @FMMM1 I was thinking about a government pause here in Canada, which some question is a roll back, and not a pause. Of course, that's one of the main concerns right now with the NICE pause. Good points @Brian Hughes If logistical reasons includes monetary issues then that's what I...

Is it really just a pause?

Exactly.

Agreed. Iron deficiency with or without anemia can cause palpitations and tachycardia. As well, I recall something in a thread here about POTS that said low iron can worsen POTS.

Yes.

Thank you @Suffolkres 4 years! Good grief! This time frame makes the timing of this last minute pause is unacceptable. I would like to say much more but will settle for expletive, expletive, expletive! Thank you so much to Doctors with ME!

Could someone remind me how long this NICE review and development of new guidelines has been going on? Two years? Even if at a long shot if GET/CBT helped some with ME, which I'm very doubtful they do, all pwME should not be put through this non-evidence based treatment. As well, due to the...

What "intensive treatment", there is none at all. Unless you count the potentially harmful GET and CBT. I find it puzzling, the things that some call treatments.

Absolutely. It is disheartening for family members to hear the pwME is having a bad patch, is never getting better etc. Family plans and ME are a very difficult mix. Long term, it's extremely wearing for everyone. The unpredictability of this horrible disease is everything from frustrating to...

Yes. Someone once told me pwME are all working as hard as they can. Many of us have some form of household to contribute to, and our own lives to run. WE ARE WORKING AS HARD AS WE CAN! Many of us often push the boundaries. We do not just sit back, watch the TV and eat bon bons. ME is an...

Absolutely agree. And again, where is child protection services in this, and what was the ethics committees thinking?