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I can't remember, sorry. Didn't happen suddenly, though.

My hair is much much thinner now, compared to before ME. My ponytail is about 1/3 or less of the thickness it used to be :(

Yet another phenomenal comment by Sten Helmfrid, this time in reply to a blog post written by a BPS extremist. Definitely worth a read :thumbsup::thumbsup::thumbsup: Here's a direct link to Helmfrid's text (in Swedish)...

The more I delay it, the worse it gets and the longer it lasts. As much complete rest as soon as possible is what works best for me. But I really do have to force myself to rest, the "momentum" of the adrenaline surge is very difficult to break and it's super tempting to just keep going.

"Symptomen blommar ut/upp" would work in Swedish too :) Yes, "relapse" is maybe the best equvalent in English? https://sv.wikipedia.org/wiki/Skov It is often described as a period of time when one or more existing symptom(s) gets worse and/or new symptoms arise, and then -- often, but not...

Me too. What word would you use for "flare/flare up" in Norwegian? I sometimes use the word "skov" in Swedish, not for regular PEM but for long periods of being much worse than usual/"below baseline". ("Skov" is a common word often used when talking about for example MS and RA. Doctors use it...

Yes, I have them too. The HFME call them "adrenaline surges", and their description fits really well with my experience: http://www.hfme.org/adrenalinesurgetips.htm From a scientific perspective we don't know if it's actually adrenaline or something else, but I still find HFME's article very...

Thank you so much for your kind words. Yes, I'm in Sweden. I completely agree with you re: the most simple, factual literature. I ordered the info sheet about dental care and anaesthetics from MEA, but unfortunately I didn't find it helpful at all in this context. I'm trying to change to...

Yes, I'm aware. Still, I don't believe it's impossible. Not easy, but not impossible either. What about the experts' letter to the HHS recommending CCC -- many clinicians signed it, right? Why would they, if they didn't see CCC as a realistic option?

I'm currently being denied dental treatment/surgery because I insisted that they consider ME, POTS/OI and the risks involved (I'm severely ill), and avoid using anaesthesia containing adrenaline if possible. I used Dr Lapp's document as the main reference together with Brook's article on POTS...

I wouldn't be so sure. It's definitely not impossible. Many of us are still working hard here in Sweden to try and make sure they use CCC for the various new guidelines that are currently under development. CCC is already/currently being officially recommended for example in the Stockholm...

Hmm,... Are you sure? As I remember it, he chose not to be on the panel out of respect for all the patients and advocates who protested against the panel and urged them to accept CCC instead of creating something new. He has commented openly on this, I can't remember where though (article, on...

Author and pwME Karin Alvtegen was interviewed on the radio yesterday 23 July, P4 Extra (audio, 18 min, Swedish). https://sverigesradio.se/sida/artikel.aspx?programid=2151&artikel=7004144 She mentioned that she will try to write a book about ME next year :)

I traveled a lot the first few years after I got ME, I’ve had Delhi Belly, Pharaoh's Revenge and the equivalent in Turkey, Thailand and several other countries in South-East Asia. My symptoms first started after a Hep A + B vaccination, though, so I always think of it as the trigger. Each of...

Patient advocate Anne Örtegren in Sweden is another great example. She did an excellent job over the years, introduced more than one scientist and doctor from the outside to ME and ME researchers, some of which turned into successful collaborations and studies. She did this by, for example...

I would be very tempted to add a word to the second sentence, to emphasize that such a psychiatric label would be incorrect. Maybe something like "Wrongly classing these as..."?

Well, what would you expect from "Team Tired"? :whistle::yawn::asleep: ETA: For those who might not remember, or haven't seen this before. A slide from Dr Nath's presentation at the CMRC conference last year.

Checking our blind spots: current status of research evidence summaries in ME/CFS Todd E Davenport, Staci R Stevens, J Mark VanNess, Jared Stevens, Christopher R Snell The evidence-based practice (EBP) model hierarchically organises scientific information by level, from lowly case studies to...

A transcript is now available at https://www.omf.ngo/2018/07/05/ron-davis-nih-grant/ Direct link to the pdf here.

You can count me in!