Discussion in 'General ME/CFS News' started by Robert 1973, Jan 15, 2018.
Worth contacting the team about that maybe?
I'm not speaking for the team but I sense that because this complaint is based on the PACE Trial authors specifically only evidence relating to CBT and GET is required. (Before or after the fact of the PACE Trial publication(s).) But always worth double checking.
Can't quite bring myself to heed the call when Sarah Myhill cries "Tally Ho!" Too much controversy and quackery in her past for my liking. However, like James Coyne, she'll do precisely what she likes without reference to anyone else, and also like James Coyne, sometimes it's useful to us and sometimes it's a complete embarassment. No idea how this is going to play out, so I'll wish her luck and enjoy the show, keeping my fingers crossed that it doesn't end up backfiring on us.
There is a website now active for easier sharing. http://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors
(Fwiw I'm no apologist for Dr Myhill. I am in no way connected to the team who are pursuing this initiative. I was unable to use any of her workup. I reacted to everything. BUT I do think this latest venture might prove useful & would suggest that anyone with well documented evidence of harms based on the CBT/GET model provide that information as requested).
Anyone who is self-employed or runs a business in the UK would usually set themselves up as a private Limited Company, at least to start with. And in the case of Dr Myhill, the private limited company she has set up is called "Sarah Myhill Limited".
According to wiki :
You can see legal information about Dr Myhill's company and its accounts here : https://beta.companieshouse.gov.uk/company/04545198
Comments about this have been added to David's latest Virology Blog and Facebook posts.
I'm also no fan of Myhill, but I think this is a good angle for someone to be taking, and it could pay off big, even if no one gets reprimanded for their PACE shenanigans. Basically it's a nice juicy story which could get the media and other parties interested in PACE and other BPS misconduct. And there's little risk of it being used to make patients look crazy, when it's a doctor leading the charge.
Much like with Coyne's escapades, I think it's safe to sit back and enjoy the show
Yes.. but I don't think it's fair to correlate Dr M with Coyne. Dr M has never afaik been abusive to anyone.
whatever happens I imagine it will generate some more press coverage
Presumably the NICE review will be looking at the scientific and medical evidence around managing and treating ME, rather than issues of investigator fraud. The PACE re-analysis stands on its own merits, while the original analysis does not, so I don't think we need to worry on that one.
A bit more hoo-hah might just help in concentrating the minds of the NICE decision makers, by raising the stakes in terms of profile, if not content.
On Sarah Myhill's website for the complaint it says,
Since the complaint asserts that PACE informed the NICE guidelines, it appears your evidence might be relevant, @Trish
Hi @Trish i think you would fall within 5 in her list of reasons for submitting evidence - denial of referral
Edited to add I think it's likely there are quite a lot of people who that's happened to
I wonder who the seven other doctors are who signed the complaint. While I don't agree with all of Sarah Myhill's medical ideas and approaches, I do appreciate all eight of them for going in to bat for us.
interesting that there is a running total of numbers of letters submitted already 11 how high will this go - like the NICE review petition this has the potential to be compelling if the numbers ramp up.
Tweet from Keith Geraghty
Trish, I think most of us have grounds for submitting evidence, even if we've never done CBT/GET. The way we are treated by all doctors had been affected by the PACE trial (and hence the NICE guidelines).
'This is a great example of the kind of DISTRESS that has been caused by PACE. These points do not necessarily 'fit' easily within the broad 5 categories listed above.
So, please do think about ANY harm that has been caused to you by PACE - in my experience most ME sufferers have been harmed in some way.
Examples of how you may have been harmed by PACE
Jacqueline Miller of the 'Support for Followers of Dr Myhill's Protocol Facebook group' (Support for followers of Dr Myhill's protocol Facebook Group) has submitted a letter with the following points included.
I have suffered mental distress as a result of PACE. For example, benefit applications, and assessments were more stressful because my illness was considered psychological
Visits to doctors, and consultants, and NHS emergency departments are more stressful because my illness is considered psychological.
I am denied treatment because my illness is considered psychological
I am accused of wasting time, and lying, and treated with contempt and suspicion because my illness is considered psychological
My word and experience is dismissed because my illness is considered psychological, and I am labelled as ‘mentally ill’.
I am labelled as a delusional patient because of negative connotations implied by doctors and NHS staff.
It appears all my other health issues, and concerns are now considered psychological, and therefore dismissed as imaginary
I experienced extreme trauma, HARM & LOSS because my illness was considered psychological
I was targeted, and harmed after complaining, because my illness was considered psychological
I am denied compensation for my disease because the physical nature of it has not been properly recognised and/or told I have a psychological condition
It is my belief PACE WAS AT THE ROOT OF THESE PROBLEMS
I WAS HARMED BY GET AND PACE RECOMMENDED GET AND SO PACE AUTHORS ARE AT FAULT BECAUSE I WAS RECOMMENDED GET BECAUSE OF PACE and denied funding for referral to a physician specialising in the biomedical approach to treating CFS/ME. Note: Funding which was already agreed, and put into place was later withdrawn, and denied.
@Esther12 @Londinium @Trish you have articulated my own thoughts & feelings perfectly
Unfortunately I fear Dr Myhill & her colleagues here will be held up as "see how these idiot quacks fire-up & encourage the anti-science brigade? this is why the patients are crazy, these are the doctors that need to be stopped!"
- She'll be one of the ones that that vile Vogt 'person' will be blaming no doubt.
However all of the above being said...The fact is that whatever is done or said by any of us will be twisted by the BPS lot, so avoiding 'own goals' is bordering on impossible. And I am incredibly grateful to Dr Myhill & the other doctors for having the balls to stand up & be counted. She will no doubt be vilified for this & knows that very well i'm sure, but she still isn't frightened off, when so many would be after she's been attacked so badly in the past. It's about time some more doctors started standing up to be counted in this fight. So God Bless you lady!
This is what i'm hoping @Lilpink
This is my 'takeaway' feeling too @TiredSam
Some questions being asked in parliamentary committee, with awkward response from sense about science member
Tweet links to parliament tv
Worthy of a new thread? Even if they didn't go into any details, good to have PACE being raised in a parliamentary committee like this. And it seems that the Chair of the Health Research Authority has said that he will look into it.
Interesting, if not very mind-blowing exchange there. Even if discussions of this sort are not new in parliamentary committees at least it looks as if someone is aware that there is a problem.
In relation to this I have still heard nothing back from the CEO of sense about science about the Maddox business - not even an acknowledgement of receipt of my statement of concern. I suppose I take that as prima facie evidence that they are not interested in probity - but I would be delighted to receive an email tomorrow to prove me wrong.
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