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According to the Parliament website, So it looks like we need an MP to introduce a motion. Carol Monaghan would be the logical person to do this, I would think. Once she's had time to regroup, perhaps someone who tweets could ask her? Hopefully the fact that the Minister for Care, Caroline...

I've heard from my MP, who asked a question at the debate. She says that due to the number of MPs who attended, and the lack of time for them to make substantial points, she thinks there is "a strong case for ME Treatment to be debated at greater length in Parliament". I think this is what we...

I think they missed a few. There were 12 MPs who made comments or asked questions: 1 - Jim Shannon DUP - Shouldn’t NICE abandon BPS therapies now? 2 Jim Cunningham Labour - Employers don’t understand the suffering involved in ME, which affects employment 3 - Alex Sobel Labour/Co-op - A...

Carol also made the point repeatedly that NICE etc need to listen to patients. She asked for assurances for compulsory training on ME for GPs, and the minister replied, "the Royal College of Physicians identified CFS/ME as a key area of clinical knowledge that GPs should have as part of their...

I think it went very well, given the very short time frame. A number of MPs participated on our behalf, and made some very strong points. They were very on target, and very clear and telling. Carol Monaghan was superb. She's clearly furious about it all, and was very well briefed. She must...

Indeed. When I was in hospital last year I was given a sleep drug that I reacted badly to, causing intense hallucinations, severe amnesia and confusion. Because I had ME, a lot of the staff didn't believe that I had no memory or awareness of things that were happening (just as they didn't...

A short article on one ex-academic's view of the negative impact of Key Performance Indicators on the quality of scientific research. https://www.theguardian.com/higher-education-network/2018/feb/16/performance-driven-culture-is-ruining-scientific-research

I've heard back from a researcher in my MP's office. My MP is intending to go to the debate, and will be in touch.

Thanks very much for that @Sasha, I couldn't get the MEAction form to work either, so have just sent a slightly modified version of your letter to my MP.

The Commissioner wasn't making quite that general a statement. He was specifically addressing QMUL's assertion that a statistician was needed to provide the data requested of them. So his remarks are limited to X being stats people. I doubt it does give rise to much work, since it would only...

Yes, I guess I was thinking in terms of keeping the structural/organisational 'thing' that is the clinic, but changing the staff as needed (throwing out the bathwater rather than the baby). Maybe that's not really feasible though.

Good of Naomi to make this point. It's often overlooked, since media articles and films etc are, almost by definition, usually written by or about those a little less severe, or about the very severe who have supportive family.

I think this is part of why the NICE Guidelines chap is hedging - if the current clinics are closed down, he suggested that in the current climate it would be difficult to get any funding for something new. That doesn't justify keeping BPS-style CBT and GET, but he does have an element of a...

Yes, according to the info provided by QMUL in the 2015 decision, there is suitable software, The problem is not the software, but that the FOI rules involve a high degree of what might be called reasonableness: it's not considered reasonable to ask QMUL to hire staff to create FOI data, nor...

The stats people were brought in by QMUL as part of their argument to the Information Tribunal in 2015. QMUL argued that the PACE data requested on that (separate) occasion would be too expensive to produce, (See the decision for some of the specifics on the database, statistical work required...

Good luck @Liv aka Mrs Sowester, hope you get a decent assessor and are successful first time round:emoji_fingers_crossed:

@Alvin, yeah, but I guess the PACE authors have published, so there are results of the expenditure (albeit terrible ones).

What we're asking is for the Garbage Dept to send us the data from a survey they did on what people think of their rubbish collections. Everyone who was involved in the survey has retired or moved on, and no one currently in the Garbage Dept knows how to find the results from the survey.

Thanks, @Esther12, I didn't realise there was a little poetic licence in the description! I agree scientific accuracy is important when it comes to making criticisms.

That neatly telling way of putting it might be worth pointing out to Carol Monaghan, for the Westminster Hall debate: it would make a good soundbite for MPs to hear.