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Many of my terms are not suitable for the forum, though the term childcatcher has been used by some. All excellent terms for the next NICE meeting and/or useful for any letters to Prof Mark Baker from S4ME before he retires.

Thank you, @Invisible Woman I will try and ascertain the ATOS view from the duty manager on Tues, if he has the stamina to answer all our questions! Obviously the priority at this stage is to get back my friend's full mobility allowance, preferably without going to the tribunal stage as it is...

I've just read on the benefitsandwork.co.uk info that recording of an ESA medical assessment can be requested, which is confusing. In my info you can ask to record a PIP assessment but only if there is a machine which can produce two identical digital copies at the end of the interview? No...

WE're working on it.....!

Interesting that NICE, at the recent workshop were stressing that they are now using the term "lay member", rather than "patient representative". They also stated that these lay members would be sharing their own views etc, not necessarily those of a group. Especially not any group that is full...

Haven't read the latest posts, but I do think that some people choose/are unable to grasp, or accept an argument..... ETA:missing /

If you gave your permission to a Tweeter on here I am sure they would Tweet on your behalf, @Jonathan Edwards I am still only at the stage of retweeting messages from others. Writing my own tweet has not reached high enough on my priority list to spend time working out how to do it, or what my...

He also mock cautioned me towards the end when we were given an opportunity by the facilitator to say what was most important/hadn't been adequately covered. I launched into the need to look at the reanalysis of PACE results with the raw data that had been released after the FOI tribunal, as it...

We had the pleasure of Mr Perrin at our table at the NICE stakeholder engagement workshop. He was one of the participants who led us up dead ends and spoke at as much length as possible about his own methods and recent research.

@Andy Did you mean 2018?

@Wonko , where are you based - roughly. i have vague recollections that you are up in Scotland, but that could be someone completely different. Is there anything that the ME community could help with?, including money/practical help.

Now they need convincing that severe cognitive impairment, physical inability to move your own wheelchair due to arm weakness, extreme pain and exhaustion are also sufficient reason to make this descriptor meaningless for many people with ME. This separation between being able to plan a route...

Just glanced thro' this and several points spring to mind. Pressures from school are increasing yearly in UK. Especially hard for non academic kids. Can't blame the schools as their performance is judged on the results at GCSE and A level. Hopefully the pressure at A level has decreased a...

Excellent email @boolybooly. I have today gone thro' the assessment decision letter and the assessment report and will be typing this up tomorrow. There are over 20 points to be raised on the decision narrative alone. This, incidentally is typed as one block covering about 1.3 A4 sides. There...

We could always "do an EC" and put up a picture of a teenage girl, who is now significantly older and does not have ME. Then we could say, actually this is not X, her parents are too terrified of the harrassment and further injuries she will sustain if her plight is made public.

I think they are planning to expand their IAPT (Increasing Access to Psychological Therapies) to all sorts of long-term conditions where the aetiology is understood. These include diabetes, asthma, mitral valve problems......

Thanks Mr Catlover/Daysailor for posting this info. Having read some examples of assessment reports I was not too surprised by some of the many "you said you can do A so I've decided you can do X,Y and Z" in my friend's report. However it is gut-wrenching for the claimant to see her words...

Burst out laughing earlier when I got the report. Physio has noted that friend worked as a self-employed builder , but had to give up X years ago for health reasons. What she actually said was that she used to do some of the admin for her husband who is a self-employed builder.......!!!!!! If...

Also I'm so sorry to hear about your ordeal so far. I know they are trying to reduce fraud. But it's the conpeople who have the brain power, stamina and experience to work the system Writing good letters/reports is one thing that physios/OTs in clinics could help with!

I will do an email. A longstanding friend has just been turned down for the mobility element of PIP, having been on full amount for DVLA (apologies if I use wrong terms/acronyms). I have only been involved since last Nov when she was sent the form. I joined the benefits and work site to get a...