Search results

I need to stop checking Twitter for the sake of my health.

https://tenor.com/view/brexit-politics-british-british-politics-election-gif-15430636

Yeah. They're all six months old, but I don't expect them to change anytime soon. It is my understanding that these have been revised with the draft guidelines in mind.

I have a friend in the states who is really struggling with post-Covid POTS.

If you mean the documents just linked by SlySaint, then no - these are fresh out the oven / cutting edge!

I actually found the original 2020 programme on my laptop. No Sonya or Chris.

Just to expand a bit; some of us in the CMRC PAG are keen to work with BACME to really drill home the message that they have to change. I think Nina Muirhead has been in conversation with them, possibly with regards to medical education. Now is the right time to be having these conversations...

I think it's good that Chris Ponting and Sonya Chowdhury are presenting. Clearly BACME still hasn't got the message. I will see if we can make progress on this through the CMRC Patient Advisory Group, as we have contact with Chris and Sonya. I don't think boycotting is the right approach.

I don't know if this is coincidence, but this thread from this morning is a personal experience of using sodium dichloroacetate for ME. https://s4me.info/threads/my-treatment-with-sodium-dichloroacetate.19505/

The rescheduled BACME 2020 conference will take place on Tuesday May 11 2021. https://www.bacme.info/civicrm/event/info?id=6 I was wondering if anyone had downloaded last year's program from the website (linked in the first post of this thread, but now taken down). I'd be interested to see what...

This isn't a new 'theory' or 'hypothesis', so I'm not sure why it's being presented as one. There's nothing new being brought to the table. The article is essentially a quick literature review of various strands of in-vogue research topics in ME/CFS. Also, it seems David isn't familiar with the...

Of course, but it's one of those areas that has been touted as a panacea, it comes up over and over again (despite no strong connection) and it's often shrouded in pseudoscience (in this case the MTHFR gene variant guff). I guess there's a certain allure to the idea that your illness might be...

If you visit some patient groups and the Other Place, you'll see methylation is still very much in vogue. There's something about it that just draws people in.

For what it's worth, I do agree in that there are a handful of ME patients who are not doing the community any favours. This seems to be an issue especially on Twitter. At times I have fallen into this trap, though I have never been abusive. We must tread a fine line. Be clever. They are waiting...

Michael Sharpe has liked Paul's recent tweet (see above). I noticed from Paul's twitter profile that he's been retweeting six-month-old Henrik Vogt (Norwegian BPSer and Recovery Norge founder) tweets, in case anyone wants to connect the dots here....

This is one of my pet hates. It really needs to stop (even in hypothesis journals).

That's true, but that's just current risk. We don't know about the future. My current risk is probably low. I don't really go out that much.

I have just been offered the vaccine after requesting to be put in Group 6 (using the ME Association letter). I am a little cautious of getting it with not knowing how it will affect me, but I will almost certainly go ahead and get it.

Don't tell Dr Myhill.

That's very true. I wish this wasn't the case though, because some of these symtpoms seem to be objective, visual evidence of illness, and some may even be suggestive of what's going on.