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I have enormous respect for Julia Newton. She is one of the few (?only) people who has managed to get any research grants for biomedical research into ME. She has worked strenuously in this field for years despite the stigma she gets from others who work in the fatigue and probably other...

Are you a member of the FB group Mums of kids with ME. There are lots of people with experience of education problems etc. Also, some of them may have PR contacts. What about the Scottish MPs, including Carol Monaghan? There is also the list of MPs who went to the Unrest viewing at Speaker's...

I think it will be applied to all regional ME groups FB or who meet up in person. One group who recently applied to join were told they could not because they were regional. It seems that N Ireland and Wales are the exceptions. It is only reps from stakeholder groups who can attend the scoping...

Ah OK a little bit out of range for most Europeans with ME. Thanks for info

Does anyone have time to contact regional facebook groups or local groups that meet, to link them together to form National networks that can register as stakeholders for more ME Community input to scoping workshop, and comments at certain stages of Guideline Development?

A couple of stakeholder reps who attended in Jan have been told that they cannot come to the scoping meeting in May because they are regional eg Barbara @Suffolkres and someone from the North London Group. Also when someone from the Crowborough group tried to register recently they were told...

I got chicken pox aged 33 and gave it to my son aged 2. Neither he nor I developed ME but his sister did. He got Type 1 diabetes aged 17, an autoimmune disease....

It may be that @Jonathan Edwards is at the Forward ME meeting, or still skiing!

Maybe worth putting from anywhere in the world after california. I nearly didn't read the thread. My daughter's hormones seem to be all over the place.

Brilliant! Well done.

Good Luck! Sorry, I have no PR experience. If I can persuade my stepsister or her daughter to watch Unrest she may be able to help with ideas. She and her husband run a small PR business and her daughter had Hodgkins Lymphoma at around 15 yrs old. She was at a small private school and they were...

This came up because Richard Watson is an investigative Journalist for Newsnight and Panorama (might be remembering wrong re the second). Maybe he would be interested in investigating disability due to ME. There were lots of references to autoimmune causes, including the GP commenting that EDS...

Hasn't Westminster recently appointed an MP for loneliness?

Surely NICE could remind people that current Guidelines on CBT and GET are "optional", not mandatory, ie with the patient's (or family for youngsters) agreement and should ONLY be suggested for those at the milder end of the severity spectrum. They should NEVER be used as a threat of forced...

URGENT MESSAGE! Charles Shepherd needs info from people who have had PIP assessments where the Assessor clearly has an inaccurate view of ME, no idea about PEM etc. I presume this is for the Forward ME Group meeting tomorrow with Countess of Mar, where the main Medical Guy from Capita will...

I think that they comprise a group of people who are pretty ill! Goes with the territory I guess. @Joh's post gives a good range of ideas from the US, and bunting sounds good. I also think that laminated pages pegged to a line are effective. It's a page with a person's picture and name and a...

I see PACE as a cornerstone supporting other psych/MUS ideas. Also as a wall behind which the Psychs are hiding whilst thinking up more income generating ideas. PACE needs to be shot to pieces/annihilated/exposed for what it is and its inventors/perpetrators exposed. As long as PACE is around...

@Trish do you have any info on this?

@Andy Do you know if MM are thinking of doing the shoe thing again? Also the Sat probably means Westminster area will be mainly full of tourists, whereas last year it was only approx 1/2 tourists and 1/2 local workers....

NOooooooo!!!!!!! We have far more important things to work on!