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Agreed. Unfortunately, there are some biomeducal specialities who have a narrow view of ME and claim it for their own. Likewise for LC. These specialists appear to think these diseases fall entirely in their bailiwick, when of course, they do not. It's also unfortunate that some with ME...

IMO, LC is not caused by sleep dysfunction. Problems with sleep can worsen other symptoms, but sleep hygiene will not cure LC, nor ME. That's my personal opinion from lived experience, and more in-depth testing that took decades to realize. ETA: yes, better sleeps can assist, but they don't...

@SNT Gatchaman Thank you for your explanation of this study. Your statement: "neuroimaging has the potential to unlock much that has been hidden...", is so very right on. Despite multiple neurological and cognitive symptoms, pwME have been extraordinarily neglected in this, and so many other...

Thank you very much David for your tremendous body of work for our community! Really appreciate your expertise and assistance! Donation done! I too recieve the Berkeley mail-outs. I understand there is likely nothing you can do to stop them. They are not a problem for me, but like many other...

From Part 2: Brain tumour cited by one medical lobbyist as corrected diagnosis, instead of the mistaken diagnosis of "cfs". Just this one case should have sounded a warning bell that was heeded. Where was caution and care in this long-standing scenario? Nowhere, it seems. Really unimaginable...

Exactly.

:laugh:

Yes, in Canada it's always been minimized. Maybe some have payed attention to the EBV MS link re the studies that came out earlier this year. But, just as it takes 30 years to change the general fleet of vehicles in a population, it will likely take a long time for medicine to take EBV...

Noted "'brain pressure'", as one of the symptoms in this article on LC. Some pwME also have this symptom. ETA: deletion

Agreed. What garbage, abuse and harm I have been through with alternative medicine. Much of what kind of helps, which is very little, I settled on myself without the very inflated costs levied by alternative practitioners.

Interesting that psychotherapists seem to believe they can have such a meaningful, or substantial effect on people's lives. This despite clients who may be dealing with poverty, debilitating illness, abuse etc.

Until recently, it's been my impression the medical view of EBV is it's rather benign, of little importance. A brief virus that one readily recovers from. With the recent studies linking EBV to MS, it appears that despite the dismissal of EBV as inconsequential, more investigation of this...

Thank you very much @Kalliope for the count. The trend is encouraging. :)

@RedFox It certainly seems there is more frequent coverage. Perhaps from more varied media outlets. Although the media involved may be the ones so inclined to cover this type of issue anyways. An actual look at the numbers, and from where the articles originate would be interesting, and could...

@BrightCandle, I share your concerns, that there might be little progress with LC and in turn ME. You bring up a good question: what help have pwME received from ME biomedical experts. It would be interesting to see. I received a recommendation for melatonin, yoga, which I already did, and...

@Mij, I agree that it's anti-social behaviour. All of it. And, I also agree, best not to engage. Just walk away. People can't count on things not escalating, not in this day and age (if they ever really could). However, bad behaviour is now a significant portion of "normal" behaviour. Rudeness...

Thank you very much Ed Yong! Bringing awareness of these pressing issues to a wider audience is vital. There are a very limited number of ME specialists in Canada too. I recently talked to a young doctor who had never heard of ME....still! The ME knowledge crisis is the result of decades of...

@shak8 That number is terrible. COVID is still a monster.

Despite the current stats on COVID deaths and Long COVID, people are harassed for wearing masks.

@Sean, your comment: "...CBT actively distorting cognition in patients"... yep, seems to me that's its aim. Or, one could call it brainwashing. :banghead::banghead::banghead: ETA: a smiley face in a washing machine would be appropriate here!