Tues 20 Feb | UK parliamentary debate: PACE trial and its effect on people with ME - Carol Monaghan, MP

I particularly liked this also ...
First, I will mention the self-reporting that was a part of the trial. Questionnaires provided the data and measures of success. There were no physiological or scientific measurements. For patients the damage was done. I am a science teacher by profession and I always told my pupils that there are a number of stages to any scientific investigation: “Start with a hypothesis. Decide how you will test this theory, what measurements you will make, how you will record your results and how you will use these results to draw your conclusions. Those conclusions, which might be different from the original hypothesis, must be based on the evidence you have gathered.”

That did not happen in the PACE trial, which relied on patient self-reporting, rather than measurable physiological parameters. Furthermore, when the results were not as expected, rather than revise the original hypothesis, the investigators simply changed the success criteria. Thus patients participating in GET who had deteriorated during the study were considered recovered.
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That was such a fantastic debate, Excellent. My only concern is that MPs may be left thinking that ME sufferers need 'other treatments' than CBT/GET.

We bloody dont. Such an idea leaves us vunerable to opportunists who claim ME so called cures by NLP etc. So many pseudo ME cures are now given an opportunity to exploit us. BEWARE !!!!!! That includes Lightning Process and Alex Howards NLP based so called treatments.

What we need is medical help with our symptoms, documentary support to access necessary ESA and PIP, support to access homecare....... And an uncompromising public statement that ME is a Medical, not psychosomatic disease. The people that need to be informed of that are our GPs, our Consultants, our families and friends, our DWP ESA and PIP assessors. Especially children, youngsters and their families must be protected... by ME being recognised as a disabling biomedical disease.

,
 
I couldn't find this. The debate has already happened, of course.

Source: The National
Date: February 20, 2018
Author: Andrew Learmonth

URL:
http://www.thenational.scot/news/16...lead_debate_on_poor_treatment_for_ME_patients

SNP's Carol Monaghan to lead debate on treatment for ME patients
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The Government are to be asked to do more to help ME patients who have spent the last seven years suffering as a result of bad science. Ever since research into the condition was published by the Lancet medical journal in 2011, people going to their GP and presenting symptoms of ME, also known as chronic fatigue syndrome, have been advised to seek psychiatric help or to run it off. That's because the trial in the Lancet said exercise and counselling would lead to a 60 per cent chance of getting better and a 20 per cent chance of recovering outright.

But after campaigners went to court to force researchers to release the raw data, that study, known as the PACE trial, has been discredited.

Re-analysis has suggested that the true figure for recovery was much lower and that exercise can often make ME sufferers much sicker. Yet, the study, despite its flaws, is still being used to dictate treatment in Scotland, England and Wales.

SNP MP Carol Monaghan is to take the fight to government, with a Westminster Hall debate today. She says she has constituents living with 'terrible pain and suffering' who have, for years, had their physical illness diagnosed as a mental illness. Monaghan says some of them have faced sanctions because the DWP do not see the illness as physical. 'I consider this debate to be a starting point rather than an end point', she said.
 
'profmsharpe

Whilst I appreciate your interest you should know that the trial was funded by the MRC and the main findings have been replicated a number of times.'



Which shows how third rate the quality control at MRC is. And yes, many studies have replicated the uninterpretability of the PACE trial, and the failure to show any objective evidence of benefit. I wonder that Dr Sharpe still thinks people are taking him seriously.
 
Good that Nicky Morgan is interested. Just a pity she's no longer in the cabinet. She had senior roles under David Cameron, including Education, but doesn't seem to be in favour with Theresa May. On the other hand being a back-bencher she has more time to take up issues.
 
Jonathan Edwards said:
Which shows how third rate the quality control at MRC is. And yes, many studies have replicated the uninterpretability of the PACE trial, and the failure to show any objective evidence of benefit. I wonder that Dr Sharpe still thinks people are taking him seriously.
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He got 23 replies and 0 likes and 0 re-tweets! (a re-tweet is like a quote)

The Ratio refers to an unofficial Twitter law which states that if the amount of replies to a tweet greatly outnumbers the amount of retweets and likes, then the tweet is bad.
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His ratio is worse than racist airlines making stupid PR mistakes for example.

strategist said:
He is trying to convince MPs that it's all a misunderstanding. This could work because MPs may not have scientific training or time to carefully examine all claims. The PACE authors are very good at creating the superficial appearance that everything is in order.
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Probably not the best tactic for him to assume a Female QC MP doesn't know the basic facts though... :P
 
strategist said:
He is trying to convince MPs that it's all a misunderstanding. This could work because MPs may not have scientific training or time to carefully examine all claims. The PACE authors are very good at creating the superficial appearance that everything is in order.
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It beggars belief Prof Sharpe is still trying to pretend PACE is hunky dory. It is bizarre behaviour.
 
My MP wasn't able to go to the debate, but I had a kind email from her yesterday:

Dear Ms Xxxxx,

Thank you for your email.

I am very pleased we could help you. It is a great shame you had to go to a tribunal to get justice.

I am very sorry I was not able to attend the debate but will take an interest in ME and give support where possible.

Best wishes,
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The thing about Tribunal was that I thanked her for her help with my complaint to Atos, and filled her in on outcome at Tribunal, which I hadn't been able to do before. Mainly because attending the Tribunal knackered me for months, indeed am still knackered.
 
michael sharpe@profmsharpe

Whilst I appreciate your interest you should know that the trial was funded by the MRC and the main findings have been replicated a number of times.

9:01 PM - Feb 21, 2018
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"Me and my mates have been doing studies as bad as the PACE trial for years with methodological flaws and as no one has bothered to look at either the methodology or the data before we just went around spinning and pimping out our unsupported conclusions to the medical insurance industry and the DWP and any other whoring establishments who would benefit from them. So whats the problem with that?".


michael sharpe@profmsharpe

Dear Ms Monaghan, Have you read the actual research publication. I shall be very happy to send you a copy.
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Dear Mr Sharpe, have you seen MPs have seen through the PACE trial and the BPS crowd on the parliamentary debate video. I shall be very happy to send you a copy.

I don't tweet but if anyone wants to tweet that back to him that would be fun.
 
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Dear Ms Monaghan, Have you read the actual research publication. I shall be very happy to send you a copy.
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This is Michael Sharpe's snooty way of saying "Hey everyone, she hasn't even read it!" Which he cannot possibly know. Didn't she say in the debate that her training was in science? Of course she's bloody read it. If that ill-informed catty remark is the best you've got Mr Sharpe, you need change your name by deed poll to something more appropriate. How about Mr Archie Petulante?
 
TiredSam said:
This is Michael Sharpe's snooty way of saying "Hey everyone, she hasn't even read it!" Which he cannot possibly know. Didn't she say in the debate that her training was in science? Of course she's bloody read it. If that ill-informed catty remark is the best you've got Mr Sharpe, you need change your name by deed poll to something more appropriate. How about Mr Archie Petulante?
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What's more, she does not have to read it, nor be able to fully fathom it. In the same way that she doesn't need a deep understanding of law, if she needs the services of a lawyer. She simply needs to know she can trust the words of people she relies on who explain the PACE issues to her, and help her understand the issues to the level she needs to.

It's another classic ploy of the PACE authors, by asking if a critic has read it. It's a diversion, and a flawed attempt to discredit her. I think he may be trying such a tactic on the wrong person.
 
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