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I was at the table last time (in January) with the "thought field therapy foundation" representative. Apart from her original introduction I don't thinks she said another word.

Has a look on the IiME conference (public) and Colloquium (private) and can only see her involved in the private one.

I think that the expectation that stakeholders at the meeting could adequately cover all the content NICE threw at us was unreasonable. It might have been if seated at a table with other like-minds who wanted to stick to the topics and with a good facilitator. NICE wanted us to cover 1. The...

I wasn't trying to argue for or against the LP being in the draft Scope. Point I was trying to make (albiet badly!) was that our last meeting was supposed to provide the key issues to populate the draft Scope. They don't appear to have listened very carefully to what we patients wanted to see...

Thank you. As far as I am aware this is the joint submission from the 25% group and Stonebird http://stonebird.co.uk/SCOPE/cover.html Agree that it would have been hard spending time on one particular topic when (as you say so well) there was so much to discuss. There also may be a...

Patient surveys on exercise and harms Reports on outbreaks i.e. Giardia in Norway The Dubbo report showing severity of initial illness This feeds into Aetiology and what evidence on exercise as an example (BTW AFME didn't bring these topics up at the meeting unless it was at another table?)

We don't to prove firm evidence but only that there are abnormalities and what they are. We can explain how mixing groups for research is maybe producing different answers as well. Just an explanation of what we know at the moment.

What were her comments on the Scope please?

I don't understand how a discussion on ME vs CFS could be considered diverting given that we were there to discuss the Scope and the Scope started with a statement on umbrella term etc. It may be that they were discussing this in a general way and not tied into the Scope though... I've seen the...

But did AFME raise Aetiology at the meeting? Did anyone hear them raise any of these points

There is a rider on top of a very badly trained and viscous horse. It's kicked and bitten before. It remains to be seen how long the rider is in control and if the water is really there or just a small puddle. Very few of the issues identified in the original meeting with NICE 17/1 went into...

Was that a patient, carer or another type of participant? (and not asking for names)

It depends on how much strength / time you have and how you feel after. Usually I feel better about speaking out. We can sometimes meet good contacts at these things and make a difference in ways we didn't realise first.

wow - 10am to 12 noon.

Just posting this while we are on the subject of the Functional stuff. This is from the "Benefits and work" newsletter (they write guides to claiming UK benefits) "“I have been a member of B&W for 4 years now and can honestly say that I would have got nowhere without you. I have Functional...

I think this part is very important in showing with the Psych group are going to now "With M.E., the body’s systems are thought to have become poorly regulated and hypersensitive. The body is in a constant state of “high alert” almost as if a switch has been thrown and the whole system is in a...

Rossy191276 It's not the first time that this idea has been mentioned and I am very grateful for the missing millions using that slogan. It's been used before on previous ME protests. I think that the missing millions publicity has been great and I hope that it grows. We face a problem that...

The Psych lobby is very good at incorporating whatever terms we patients use or stealing words from other less harmful regimes to try and make us feel that whatever they suggest is good or helpful. So in the hands of these people the energy envelope becomes something to start with and is a...

It seems to be common in both the UK and Australia for doctors and medical staff to use terms like graded exercise or Pacing or GET or CBT or activity management and these can have completely different meaning from the other. New patients don't understand that the advice they are getting is so...

When I took Metformin (doctor at that time was suspecting PCOS on top of everything else) my muscles simply packed up. I could barely move. Had a severe gut ache but the memory that remains was of being almost paralysed with weakness. My post exertional ME is like that for me (the muscle...