Follow-up actions from 21 June Westminster debate - thank the MPs, donate to UK #MEAction

Two important actions in the #MEAction report on yesterday's Westminster debate:


Thank the MPs who attended

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I emailed my MP asking her to attend, however it was only the day before so I acknowledged that she would be unlikely due to her busy schedule.

She replied with a very positive and personalised email stating that she had heard many harrowing stories from others in the constituency. She cited the NICE review (which I had not mentioned), saying how positive it was and that she was very hopeful it would produce change. Perhaps most importantly, she said she would write to Jeremy Hunt on my behalf, and would get back in touch with me once she had heard a response.

She wasn't sitting on the fence at all. She was right on our side, and I get the impression we can rely on her to stand with us in the future. I will make sure to thank her once we hear back from Jeremy Hunt.

 

I'm not sure if this was posted for viewing but here is the full debate on YouTube.

 

I guess the thing that he skipped over the quickest Trish was anything to do with the NICE guidelines, just saying it is all down to NICE who are independent. Maybe ask for a specific response to the comments by Ed Davey about patients being currently at risk of being harmed by GET possibly MP could write to the minister and NICE about it??

 

I think I will write to my MP again with the transcript @Trish even though she didn’t make any similar commitment she did previously say she would discuss with colleagues and I asked her to speak to Nicky Morgan, same party.

 

I wonder if MEAction - or someone else - could produce an easily-accessible list of the MPs (those who spoke, those who attended but didn't speak) and a list of their constituencies? Letters of thanks will have much more impact if they come from people who live in the constituencies of the MPs in question.

Just out of interest - who's your MP @NelliePledge ? I'll understand if you'd prefer not to say.

The two most important things I would pick up on in the Minister's response are:

1)The Minister seemed to suggest in his reply that the MRC has this all in hand. It's now over 15 years since the MRC published it's ME/CFS research strategy - at the direct request of the Department of Health to advance biomedical research into the condition - and sadly it hasn't produced anything of value yet. In no small part that's because one of the first research projects they backed was the PACE trial, which muddied the waters by claiming psychological interventions were effective treatments even though the trial data didn't support this claim. The methodological problems with the PACE trial are now well known and yet the MRC failed to pick up on any of these issues before the trial launched or while it was running. Complaints to the MRC about the management and oversight of this trial have not produced any meaningful response to date. The continued presence of one of the PACE authors on the MRC's ME/CFS Expert Group is a clear sign to sufferers that nothing is going to change anytime soon. From all this it seems clear that the MRC's current research strategy into this condition is not likely to produce results, and there is an urgent need for a new approach.

2) While the Minister was right to say that it would be wrong for him to interfere with the process of updating the NICE guideline on ME/CFS, it seems perverse that recommendations of CBT and GET should remain in place during the review process. The guideline is being updated because serious doubts have emerged about the effectiveness (and safety) of these treatments, so it makes no sense for the NHS to carry on recommending these treatments to sufferers (or for the DWP and insurance companies to insist that patients must undertake these therapies before they can access benefit payments, although this is not the Minister's responsibility...) during the period it takes for the guideline to be updated.

 

From Hansard, the list of speakers is:

• Carol Monaghan (Glasgow North West) (SNP)
• Mr Jim Cunningham (Coventry South) (Lab)
• Mark Tami (Alyn and Deeside) (Lab)
• Jeremy Quin (Horsham) (Con)
• Robert Courts (Witney) (Con)
• Patrick Grady (Glasgow North) (SNP)
• Liz McInnes (Heywood and Middleton) (Lab)
• Andrew Selous (South West Bedfordshire) (Con)
• Michelle Donelan (Chippenham) (Con)
• Sir Henry Bellingham (North West Norfolk) (Con)
• Scott Mann (North Cornwall) (Con)
• Sir Edward Davey (Kingston and Surbiton) (LD)
• Michael Tomlinson (Mid Dorset and North Poole) (Con)
• Dr David Drew (Stroud) (Lab/Co-op)
• Alex Sobel (Leeds North West) (Lab/Co-op)
• Alex Chalk (Cheltenham) (Con)
• Jim Shannon (Strangford) (DUP)
• Kate Green (Stretford and Urmston) (Lab)
• Kerry McCarthy (Bristol East) (Lab)
• Ben Lake (Ceredigion) (PC)
• Stephen Kerr (Stirling) (Con)
• Kelvin Hopkins (Luton North) (Ind)
• Liz McInnes (Heywood and Middleton) (Lab)
• Stephen Pound (Ealing North) (Lab)
• Luke Pollard (Plymouth, Sutton and Devonport) (Lab/Co-op)
• Liz Twist (Blaydon) (Lab)
• Sir Desmond Swayne (New Forest West) (Con)
• Gavin Newlands (Paisley and Renfrewshire North) (SNP)
• Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)

There were also:

• The Parliamentary Under-Secretary of State for Health and Social Care (Steve Brine)
• Andrew Rosindell (in the Chair)

 

Actually if you look at the files released from Kew, you will see that they were using the "we're ready to accept any worthwhile biomedical study" excuse back in the 90s in response to patients' questions. You will also see that the Gibson Inquiry of 2006 skewers that.

I was thinking of writing to the minister directly, including the comments @Stewart made with other stuff (I made a formal complaint to the MRC about this a few years back), to warn him off accepting any more repetition of this rubbish. How about I knock something up, then post it in a new thread where those of you who can understand my ramblings and translate them into coherent sentences can do so?

Then I or we could submit it to him, and send copies to a few key players?

I know there are many other issues, but in terms of research, it is my belief that although many of the folk at the top are sympathetic, the evidence from a number of places suggest that the prejudice against ME is widespread and systemic, particularly among the more influential medical folk. I think it would be worth focusing one letter just on that.

 

Wasn't there a group of researchers around 200/2004 rather like the CMRC but without the baggage, including people like Mowbray, Tyrell and others who could not get funded for anything because PACE took all available money?

 

Also it was good to see copies of the green booklet from the Journal of Health Psychology scattered about. I have dropped a line to the editor, David Marks, to draw his attention to it, and to tell him to polish his halo for helping us make an impact.

 

There was a research charity called the Persistent Virus Disease Research Foundation who funded them. They re-named themselves the CFS Research Foundation. By the mid-2000s, they were just funding Jonathan Kerr. I know he felt one or more of his applications to the MRC were unfairly treated.

 

The MRC say that they do not work like that. No money is earmarked for any particular illness – it is one reason why they do not give any breakdown into different conditions of how they spend their money. According to them, applications get reviewed and scored, normally by 3 people, and then those reviews and scores are passed to a committee who decide which applications have made the grade.

Probably my key objection was that one repeated applicant, Jonathan Kerr, said that his applications normally scored 9, 8 and 4. Now I have no way of knowing what the quality of his applications were like, but I do know about assessment and scoring. There should be pretty comprehensive guidelines given about what is required for each level of score, together with some form of training to ensure that assessors understand what is wanted. Those assessements then go to a supervisory body to agree on a final grade. It isn't that unusual to get grades of say 9, 8 and 8: that would indicate a performance around the 8/9 boundary. But a response of 9, 8 and 4 would ring major alarm bells. Either the guidelines were inadequate, or the assessor was incompetent.

I suspect that little in the way of guidelines were given, and assessors were given pretty much a free hand to award whatever score they felt appropriate, leaving it wide open to prejudice or favouritism.

 

If I recall correctly, he felt he was treated unfairly by mental health researchers and felt ME/CFS applications shouldn’t necessarily require such reviewers.

 

I think at least indirectly that the PACE and FINE trials did affect other funding e.g. MRC research strategy came out in early May 2003. Two weeks later, funding for the FINE and PACE trials announced. Looked like there was/were shenanigans in how research strategy drawn up to ensure it justified funding of the trials. Big into saying knowledge of cause of a condition not necessary to treat it.

 

I'm afraid I'm just p'd off with my Tory-toe-the-line-do-what's-best-for-my-career-prospects MP. I briefly emailed him asking for him to attend the debate, and I got the standard-letter claptrap back. So I replied simply by pasting the complete transcription of Sir Edward Davey's speech, as per @strategist's post https://www.s4me.info/threads/uk-21...red-by-carol-monaghan.4468/page-14#post-84032, including the Hansard link.

 

Yes, he reckoned that always one of the three reviewers was a psychiatrist/psychologist who scored him down. Of course, I've not been able to get any evidence on that. But the disparity in scores itself shows something was fundamentally wrong.

 

he has tweeted a photo @Graham he has it pinned

 

That's how I remember it too.