Malcolm Hooper: Letter from Professor Hooper to Bridget Phillipson MP http://www.margaretwilliams.me/2018/hooper-to-phillipson.pdf 16th July 2018 Dear Bridget, Many thanks for forwarding the letter of 14th June 2018 (PO-1133220) from Lord O’Shaughnessy, Parliamentary Under Secretary of State for Health (Lords) in response to my request for your support for Carol Monaghan MP’s presentation in Parliament about the medical scandal of the PACE trial involving ME/CFS patients. I should be grateful if you would kindly forward this reply to Lord O’Shaughnessy himself please and inform him that I require his response to the issues I raise herein. Carol Monaghan MP has done a great service for the whole ME community, including not only patients and carers, but also sympathetic and informed clinicians. Finally the truth is now emerging about the PACE study and hence I found Lord O’Shaughnessy’s reply to be egregiously erroneous…
Anyone seen a copy of the letter this was responding to? Is it available anywhere? I didn't read all of Hooper's reply, but thought that there were some problems with it. It seemed to be doing everything it could to attack O͛'Shaughnessy's reply, and so mixed some weak points in with stronger ones. I also think parts of the tone were likely to be a bit counter-productive.
It's a bit long for a letter to a politician. I can see their eyes glazing over after page one, and it being passed to an aide to summarise, or being put on the ignore pile. It does make lots of good points, but not necessarily in the most effective way.
O'Shaughnessy's letter wasn't submitted. Perhaps there is a code which advises that letters written to someone else not be reproduced without the writer's approval. The tone was strong but the argument made that the DOH had recognised ME as a neurological illness for many years, several examples given, but O'Shaughnessy was walking it back deserved a strong response I think. It is long but once I had worked out who had written to whom, and why - I think that Bridget Phillipson has a constituency in the north east so may well be Prof Hooper's MP, I found the detail very interesting. It covers a very wide subject area, bringing in some of the slightly older stuff when Prof Hooper was more prominent, as well as the US changes that have been made, and current issues. Yes, an aide may be involved but I just enjoyed the thought/ fantasy of O'Shaughnessy grappling with it all summer. EDIT: sp
Thanks. Would be good to see exactly what was said, and I'd have thought official ministerial correspondence could be published, but maybe you're right. I thought that was a weak and confused point. "In particular, I seek his clarification about the diametric difference between his Department's support for the PACE trial as set out in his letter to you and his Department's stance as set out in Hansard." What diametric difference? Are there quotes in Hansard where the Department puts forth the view that the PACE trial is unsupportable? Or is it just being assumed by Hooper that to support the PACE trial is to reject the WHO's classification of ME as a neurological condition? If so, I think that's an unreasonable and unhelpful approach. Tying criticism of PACE to the matter of whether or not ME is best understood as a neurological condition is always unhelpful for us. It lets Sharpe/Wessely/etc respond with blather about the problems of dualism, and the unfortunate misunderstandings that led to patient opposition to PACE, while they avoid all the real problems with PACE. "By supporting the now-proven fraudulent PACE trial results that categorise ME/CFS as a behavioural disorder, Lord O'Shaughnessy is contradicting his own Department's official policy." I don't think claims like this are going to help bring anyone on side.
@Esther12 I agree with you that it's hard to follow the argument carefully when we don't have one side of the correspondence e.g.what did Lord O'Shaughnessy set out in his letter as his Dept's stance? Am unsure on your point about whether Prof Hooper is assuming that to support Pace is to reject ME as neurological. Can that not be argued? I really ought to read it again but since I am hot and bothered, and going away on Thursday, and evenings are the coolest time for preparation, I don't think I will be doing that. At least not this evening.
I guess that anything could be argued, but I don't think it's a strong point to base an argument on. Some rehabilitative approaches can be useful for some neurological conditions. The WHO classification of ME is pretty much irrelevant to the problems with PACE imo.
Could use a few paragraph breaks. Also, I have no problem with generic rehabilitation, if it works, as it clearly can with conditions like strokes. But it is an utterly inappropriate model for ME until we get a primary treatment that makes secondary rehabilitation an effective option.
Made mine aware of it anyway ... which he jolly well should already be anyway, but thought I'd make sure.
And if we get an effective primary treatment, I seriously doubt patients will need much encouraging to get out and about. Rehabilitation will largely take care of itself.
If we get a primary treatment that works, I think rehabilitation is more likely to involve the use of elastics or other types of restraints to stop us from bouncing around freaking everywhere. There will likely be more broken bones from people rushing to use wobbly legs and crashing into things while they're screaming in the air "I'M FREEEEEEEEEEEE!" or taking up too many extreme sports.
Indeed, any useful role rehabilitation might play could well be entirely in encouraging patients to not overdo it in the first few days and weeks. Advice like: 'Probably best not to run a marathon for the first couple of months.'
I think politicians and health care professionals everywhere, including outside the UK, should receive a copy of Professor Hooper's letter. It covers this terrible situation; the problems with the PACE trial, lack of treatment for ME etc., which James O'Shaughnessy and many others need to take on board. Thank you Professor Hooper!
Just pointing out that Lord O Shaughnessy has had no involvement with this response it is a draft prepared by a junior civil servant in dept of health it would have been signed off by a more senior person before going to the ministers office but as you can see it is a private secretary who has signed on his behalf. It’s unlikely any of it has been read let alone absorbed by the minister.
Yes, @NelliePledge, thank you! Junior civil servants actually have a fair bit of power, as they have in my own government's system. The assistants are the gate keepers. I assume they get directives from the politicians, but the details are left to these junior staff. Eventually, though, with enough noise, the Minister's, MP'S etc. will hear this. In Canada, we get the same blathering form letters about the same topic from several different ministerial assistants. They are not really listening.
