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Such a shame that even the "repliers" to emails, presumably a low pay grade, have learnt the art of answering a question that wasn't asked.

I have a feeling that Mark Edwards was at the first NICE workshop in Jan

Have to admit it's my tongue in cheek preferred version, but in the light of medical history it could be considered more accurate

Just bought one, to take advantage of the early bird rate

The ELFT (anything to do with the mental Elf?) has been a prime mover in piloting the MUS (or whatever they are calling it this week?) approach. I don't think it is surprising that CFS clinics are closing while the psychs roll out their scheme to maximise their income from those with YUMS (Yet...

Probably time i got a ticket.... as I'm fortunate to be well enough to go, and have postponed a holiday so that I am around.

I expect she is aware of the debate, but there would be no harm in any Uk person emailing her, in case one of her constituents doesn't.

Have just emailed Carol re the shortcomings/harms etc with the majority of the current CFS clinics and that PwME do NOT want more of the same. I have outlined in brief, some of the useful services that clinics could provide and that a few do. I know of two, one clinic near Manchester and one...

Was that the release of the raw PACE data?

The Radio Scotland piece starts about 36 mins into the program and lasts till 53.13. It's a good piece with Carol Monaghan sounding strong on needing to expose the PACE trial for what it is. I think she needs to be aware that many specialist CFS Clinics are just following PACE recommendations...

Thanks @Kalliope I think we just all have to keep bashing away in any way we can. Brick by brick the PACE wall will be demolished and the MOB hiding behind it exposed. Is anyone any good with cartoons or songs. "We don't need no exercising, we don't need no thought control No dark sarcasm in...

I know Breakspear try and push expensive and extensive testing and many have spent thousands without gaining improvement. . When we took our daughter there in Dec 2011 post GOSH, they did many relevant blood tests. They tested her ASO, ( Anti streptolysin titre) It was raised, indicating an...

Maybe stories laminated on to A4 could be part of the 12 May ME Action .I envisage them pegged to a "washing line". We shd find out on 21 Feb more about what is being planned. The disadvantage of it being on a Saturday is that MPs/Civil servants won't be around Westminster, just an even higher...

You are a star @Andy . Thanks

Hi @Liv aka Mrs Sowester . My friend uses Baclofen as part of her pain meds. She also started Naproxen which is NSAID, stronger than Brufen, but better on the gut than Diclofenac etc. She has IBS as well. Can't remember have any of the vasodilating rubs such as Tiger balm or Ralgex been...

@Andy Would it be worth having a new thread about this along the lines of "Please email, tweet or like/comment on Facebook to Carol Monaghan MP. Less tahan a week to go before MPs debate ME in Westminster Hall on 20 Feb." Probably not in that order! Just so everyone knows they can boost the...

Or maybe it will go towards Jo Cambridge, Fane Mensah etc at UCL, as their work on B cells has been done with collaboration From F & M?

Yes, it is them. Hopefully their message is clearly enough not an endorsement for LP, to be a major problem.

Saw earlier on a more international ME FB site that they are selling T-shirts that say "SMILE FOR ME". NOOOOoooooo! I will try and locate it later and let them know. (I had just noticed it flicking thro posts on my mobile when out)

@Valentijn please could you do an email re Netherlands if you have the energy, wouldn't need to be long, just emphasises that PACE has led to disastrous consequences around Europe too. @TiredSam could you or a fellow resident do the same re Germany. Can't remember current avatar name for French...