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I totally agree that no CBT is better than PACE CBT. We know that PACE CBT is DANGEROUS. In my experience, support to learn how to pace or what I've been calling 'supportive CBT' is helpful (but is not a "treatment"). In my ideal world people would be diagnosed quickly and then get a little...

I think it's in the early years that it's really important. A lot of damage can be done in that period by continuing to push through and not understanding pacing. It doesn't seem right to expect people to work it out on their own if that takes years and involves making mistakes that could make...

I had the unhelpful kind of CBT when I first got ill. It made me worse. Then two years later I had the supportive kind of CBT from an NHS therapist who knew a lot about pacing. This type was really good and helped me feel more stable. But it wasn't a treatment, just good management. My illness...

The woman in the picture doesn't look particularly impressed with the tweet either ;) (Neither does she look ill.) I think it shows that he doesn't believe that it is harmful just that some patients don't want it. If he accepted it was harmful he wouldn't be happy with GPs recommending it to...

Typo in the abstract is not good is it?!

I agree, there are positive elements to the letter but I think that what Doctors want is good evidence (which exists) and not links to self-published books on amazon or cartoons (which I actually found a bit confusing). The letter could probably be more concise and better evidenced. I agree with...

@Robert 1973 really well done - brilliant letter, really concise :emoji_thumbsup:

It does seem to be going slowly which is a shame. I agree - a reflection of lack of funds rather than lack of support I think. I've donated what I can and feel pleased to have been able to do so (just a small amount but it all adds up!)

Great letter by David Tuller. I find it worrying that the LP is in the scoping document, I bet Phil whats-his-name worked hard to get it there. Let's hope that the letter has an impact and the holes in Esther's trial will discount it and the LP from the NICE guideline considerations.

@Simon M Thanks so much for this explanation. Does the T cell clonal expansion play a role in non-Hodgkins lymphoma do you know? Several people in my family have had Non-Hodgkin's and it is also more common in people with ME so I feel there's a connection for me, I'm always curious to know what...

Great news!

If you're going to organise a discussion with people with a disability then surely you should make it accessible. In this case the ideal adjustment would be to visit people in their own homes but if this isn't possible why not use technology and make it conference calls so people can participate...

Very interesting. I like the suggestion that PEM should be renamed "Post Exertional Disability" - much more accurate :thumbup:

Exactly!! :) :)

@JenB Although I agree that a showing on UK terrestrial TV would have a HUGE impact, I think that its really positive that you had this response - it definitey bodes well for a future showing of Unrest and maybe other projects. And perhaps Unrest has woken the BBC up a bit on this issue and...

@JenB thanks for your input, what you are doing is amazing.

I think we've got the slogans we need, 'millions missing' is good, 'a time for unrest' is good. Sorry but I think anything that uses the 'Living Dead' sounds gimmicky, overblown and comic but not in a good way (reference to zombies), just my opinion. I think we need images of what sufferers...

Wow, this is really well written :)

This is so bizarre - to start by making it all about her and what she worries about reads very strangely to me. And the bit where she says: "Delivering treatment online seems such an obvious way forward for teenagers it is slightly surprising it hasn’t been done before. My teenagers are often...

My overall feeling was that the visuals of the severely ill patients outweighed the bit where she talked about supplements and her recovery. The truth is that some young people do make significant improvements and I guess she had to explain why she was now well enough to make the program. To...