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MAIMES: Would you like a Public Enquiry into the lack of care and treatment for people with M.E?

I've seen this being shared around Facebook for almost a week now, so far this seems to be the only source of information about this project.
WOULD YOU LIKE A UK PUBLIC INQUIRY INTO THE ABUSE OF ME SUFFERERS OVER DECADES OF NEGLECT?

WOULD YOU LIKE A FREE COPY OF DR MYHILL'S NEW CFS/ME BOOK TO GIVE TO YOUR MP?

If you would, then please read on. Dr Myhill has formed the MAIMES campaign - Medical Abuse in ME Sufferers - and the preliminary but very important stage in this campaign is detailed below. Please only offer yourself for this if you really do feel that you can ''carry it through''. We don't want to make anyone ill by them pushing themselves to do something that they really can't. Your chance will come later.

Dr Myhill is in contact with very many support groups and is sending out the same message to them.
Also, please not that once an MP has been adopted then no one else can adopt that same MP. Hopefully the post below is clear.

Kath Ryn and Cra Ig

HERE IS DR MYHILL'S MESSAGE -

Campaign MAIMEs (Medical Abuse In ME sufferers)

For decades PWME (‘People With ME’) have been subject to medical abuse by doctors who have repeatedly refused to accept that this illness has a physical basis. The evidence for this is:

1. Patient testimony. PWME suffer clear physical symptoms but are told by their doctors that these are “all in the mind”. They are made to feel like hypochondriacs. As a result, PWME have been denied proper treatments, compensation, disability and pension rights. See [1] below for details of this Patient Testimony.

2. Such abused patients have organised themselves into support groups. These groups have lobbied valiantly but have failed to achieve proper recognition for their disease. These groups include: Gulf War Veterans, carbon mon-oxide poisoned PWME, Sheep Dip flu PWME, Aerotoxic pilots, 9/11 fireman, survivors of silicone PWME, sick building syndrome, mercury amalgam poisoned PWME, Lyme disease and co-infections and many others at home and abroad.

3. PWME are directed by the NHS to psychiatrists for treatment. These psychiatrists employ two “therapeutic” tools namely Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). These tools were subject to a Government funded trial (called ‘PACE’) which purported to show evidence of their effectiveness. This study has now been shown to be scientifically flawed. The PACE trial is at best incompetent and at worst a fraud and yet its conclusions are still believed and applied to PWME. In consequence, the above abuses were and continue to be perpetrated. Patients have been given wrong advice, their condition has worsened and state welfare and other benefits have been denied on the basis of this incompetent and potentially fraudulent study. Please see [1] and [2] below for details of the harm that has been done to PWME and for details of the debunking of the PACE study.

4. Doctors who recognise the seriousness and physiological basis of ME and treat them accordingly are targeted and prosecuted by the General Medical Council. Complaints against these doctors have arisen because their recommendations do not conform with conventional medical treatments and NICE guidelines.

5. NICE Guidelines contain no logical, evidence based treatment for PWME. By contrast practitioners working outside conventional NICE Guidelines have established many effective treatments which are safe and efficacious and which get people back to work and off benefits. The British Society for Ecological Medicine, a group of likeminded medical doctors, spearheads many such techniques.

The above abuses have many parallels with the mental and physical abuse of children. Both groups are unable to properly defend themselves and are at the mercy of a misled, incompetent and ill-informed Establishment which employs many techniques to keep hold of its power-base, including cover-ups. Like the case of mentally and physically abused children it is time for a proper investigation into the abuse of ME sufferers.

Campaign MAIMEs is a drive for a Government Public Inquiry aimed at:

1. Achieving proper recognition that this is a physical illness so that patients can properly access benefits and appropriate treatments. The abuses of PWME must be reversed.

2. Rewriting NICE Guidelines using evidence based medicine that is logical, biologically plausible and with a proper scientific evidence base.

3. Establishing that PWME should be treated by practitioners with specialised training in the physical causes of ME. These practitioners should include doctors, nutritional therapists and experienced patients.
ACTION

This drive will be spearheaded by Dr Sarah Myhill, Craig Robinson and Katie Lloyd. The first goal is to sign up as many MPs as possible to the aims of MAIMEs. Once we have sufficient MPs on side we will approach the Secretary of Health to demand a Public Inquiry.

We need “adopters” who are physically able to attend their MPs’ surgery and also who feel that they can explain the issues as detailed above in as convincing a manner as possible!

If you can be such an “adopter” please read below to see how to get the ball rolling.

1- Once you have decided that you can do this, you become the adopter of your MP. There can be only one adopter per MP. Please email your details and the MP’s name and constituency details to gail@doctormyhill.co.uk so that we can make sure that each MP has only one adopter and also to keep a “Master List” of adopted MP’s.

2- We will then send the adopter [ie YOU!] a free copy of Dr Myhill’s new book second edition: “CFS – it’s mitochondria not hypochondria”. Contained within this book is the evidence base for the above. You will find this evidence mainly in Chapter 1.

3- Attend your local MPs surgery, explain the above issues, using this sheet as a prompt, give him/her the copy of the book, show them Chapter 1 and convince them! Then ask him/her to sign the form below. If you are successful, please scan the slip and return it to gail@doctormyhill.co.uk We will of course provide feedback with MP lists and adopters via Facebook so you can see how the campaign is growing. If you do not wish your name to appear as an MP adopter then please use a pseudonym.

4- If you cannot convince your MP to sign the slip, please leave them with the more detailed ‘MAIMES letter’ as attached and also the copy of the book. Then please do chase them! Please tell gail@doctormyhill.co.uk that you were unable to initially convince your MP to sign the slip and then please do keep gail@doctormyhill.co.uk up to date with further progress.

LINKS
[1] – Patient Testimony – “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” - please see this link - http://www.ncf-net.org/library/Repo...
[2] – Debunking of PACE study – “Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial” please see this link - http://www.meassociation.org.uk/…/a-preliminary-re-analysi…/

HERE IS THE FORM OF SLIP THAT WE ASK YOU TO GET SIGNED BY YOUR ADOPTED MP TO SUPPORT MAIMES' AIM OF HAVING A PUBLIC INQUIRY INTO THE MEDICAL ABUSE OF ME SUFFERERS:

Please copy and paste this whole post and take with you to your MP so that you can argue our case and get the slip signed!
Many thanks
Campaign MAIMEs

DATE …………………………………………………………………………..
I am the MP for ……………………………………………………………
NAME …………………………………………………………………………..
I agree with the aims of Campaign MAIMEs to establish that:
ME is a physical disease with primarily physical causes.
That this should be properly reflected by NICE Guidelines and by NHS treatments available to ME sufferers
That this should be properly reflected by compensation, disability and pension benefits.
That we require a Government funded, cross party Public Inquiry to establish the above.
SIGNED
Date
Witnessed by

All text quoted from https://www.facebook.com/notes/ali-...-and-treatment-for-people-w/10154842358520638

I would have thought that a Facebook group, page or some similar central point to 'run' the campaign from would be needed, please post if you are aware of one, so far I haven't found anything.
 
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I love the objectives ...hate the tone of the paragraph and the proposal though... sounds too emotive and like a victim support group whinging rather than advocates of real science? Needs a serious rewrite imo to make it more compelling and less "hysterical".

There surely must be more to this than talking up the latest Myhill book? i bloody well hope so since we need to be a lot smarter than this. How many pwme feel comfortable talking up science to MPs in a structured and consistent way with no guidance or leadership? And more importantly no spokesman or coordinator to champion the cause with the press etc. I would like to see a little more in terms of support before doing this. If all I'm doing is being myhills literary PR agent with no further help leadership or campaign structure than what I see here, then I won't be joining this particular campaign. More info needed on this one I think?
 
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2,158
I'm not at all sure that a campaign tied to the work of one doctor is the right way to go.

We need all, or at least most of the ME charities behind this, and cast iron evidence that stands up in court of the harms of GET and the failure of PACE. We also need to find a way to show that the leaders of the BPS model and GET/CBT treatments have wilfully ignored the biomedical evidence and evidence of harms of their treatments.

What we don't need, and what I think would scupper such a legal challenge, is to muddy the waters with support for one particular small group of doctors providing other treatments, especially ones that haven't, as far as I'm aware had the funding to mount sufficiently large double blind clinical trials to prove the efficacy or otherwise of their treatments.
 
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The latest post in the thread on Simon Wessely on the BBC is relevant to this:
http://forums.phoenixrising.me/inde...ith-simon-wessely-14th-feb-2017.49161/page-11

from @ukxmrv :

It simply isn't true that SW walked in to a vacuum of ignorance at the National ( as opposed to a willful ignorance)

There are a couple of documents by Margaret Williams which are snippets as she says but are a good starting timeline of what was happening in the late 80's and 90's in the UK.

As an example (and I've split it up for readability)

"1988: At a meeting on ME held at The Royal Free Hospital on 16th May 1988, Professor Tim Peters from Northwick Park Hospital said his team had found abnormalities of Type II muscle fibres (anaerobic) in ME patients, which were atrophied, with hypertrophy of Type I muscle fibres; he had measured total RNA in muscle cells and found it to be significantly reduced in ME patients (if there is a decline in RNA, there is a decline in the ability to make muscle protein – infusion of tag-leucine showed overall metabolism is clearly reduced and the rate at which muscle is being formed is reduced).

1989: Professor Peters (then Professor of Clinical Biochemistry and Consultant Chemical Pathologist at Kings College Hospital, London) wrote on page 24 of the magazine InterAction No: 3 of the charity ME Action, now AfME: “Exciting studies have recently been reported of persistent viral RNA in biopsies from patients with ME….

Based on these observations we have started to investigate muscle protein synthesis; that is, the ability of muscle to repair itself…in patients with ME. Measurements of muscle RNA, the machinery for protein synthesis, showed consistently reduced amounts in their biopsies. Studies of whole body and, specifically, thigh muscle protein synthesis rate in these patients show reduced values and thus a pattern is beginning to emerge of persistent viral infection, and possibly re-infection, interfering with the machinery for making tissue protein and thus impairing protein synthesis”.

Discussing the view of those who claim that changes in mitochondrial function and impaired muscle synthesis are merely secondary events due to lack of use of the muscles, Professor Peters continued: “It is hard to see how (this) can explain the persistence of enteroviral RNA in muscle fibres….immobility leads to a selective loss of Type I fibres, a feature not seen in patients with ME”.

The same issue of InterAction reported on page 22 the neurological abnormalities found by Carolyn Warner and her team from Buffalo, NY (elevated IgG synthesis, elevated CSF cell count, prolonged visual evoked response latency, abnormal EEG and MRI lesions, and neuromuscular abnormalities including over 20% polyphasic motor units on quantitative EMG, inflammatory infiltrates and Type II fibre atrophy, these being reported in Neurology 1989:39:Suppl 1: 420).

Commenting on these abnormalities, Dr Goran Jamal, Consultant in Clinical Neurophysiology at The Institute of Neurological Sciences, Glasgow, affirmed that those results are consistent with disturbed immune function and persistent infection, and that it proves once again that one can find neurological abnormalities if one looks."

http://www.meactionuk.org.uk/Grey-Information-on-ME-CFS.htm

http://www.meactionuk.org.uk/Grey-Information-Part-2.htm
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I've never really been convinced by Myhill, although I know she has her ardent supporters. I'm not about to jump onto her bandwagon. Could end up with another Coyne-type situation, ending with lots of emotion and recriminations. If I was choosing a saviour to follow it would be someone like Ron Davis or Jen Brea, not Myhill.
 

charles shepherd

Senior Member
Messages
2,239
Worth noting that there are already parliamentary initiatives in progress, involving the charity sector and the Countess of Mar, in relation to the enormous public cost of the PACE trial (Public Accounts Committee) and the development of new NHS services for people with MUS (medically unexplained symptoms/syndrome) and wider issues relating to management and services for people with ME/CFS (House of Commons Health Select Committee)

Obtaining a Public Inqury into something like ME/CFS is going to be an extremely ambitious, time consuming and costly target

The whole process requires a great deal of thought and planning relating to the way in which the case needs to be made

It also requires widespread support from charities, parliamentary colleagues, sympathetic doctors etc etc

Worth reading:
http://www.telegraph.co.uk/news/ukn...or-a-useful-adjunct-to-the-legal-process.html
 

charles shepherd

Senior Member
Messages
2,239
Very glad to hear this @charles shepherd, this is something I find very concerning and alarming and has worsened my fear of engaging with NHS medical professionals.

There is growing interest from the new CCGs (clinical commissioning groups) in the problem of how to manage patients who have what are termed medically unexplained symptoms/syndromes (MUS)

They are being advised that a far more cost effective way of dealing with these patients is to lump them all together and provide a multidisciplinary service (which is often far more psychological than medical) rather than trying to have individual specialist services - as currently occurs for ME/CFS

The private and 'non profit' heath sector is also playing an increasingly important role here - where chronic fatigue is often equated with CFS

Example from Insight Health:

https://www.insighthealthcare.org/our-services/talking-therapies/common-issues/chronic-fatigue/
 

wdb

Senior Member
Messages
1,392
Location
London
Can someone please tell me how much more evidence is needed before ME ceases to be in the 'medically unexplained' category?

I seem to recall the IOM cited over 9000 studies in relation to ME. How much more proof is needed?

But what have those studies proven ? There is no conclusive diagnostic test, no confirmed bio-markers, no consensus on aetiology.
 
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charles shepherd

Senior Member
Messages
2,239
Can someone please tell me how much more evidence is needed before ME ceases to be in the 'medically unexplained' category?

I seem to recall the IOM cited over 9000 studies in relation to ME. How much more proof is needed?

In very simple terms the medical profession as a whole - most of whom have no in depth or up to date knowledge about research into biomedical factors that are involved in causation of ME/CFS - will continue the physical vs psychological debate (along with dumping ME/CFS into the MUS, FSS barrel) until research can demonstrate consistent and robust pathology that is clearly linked to the symptoms.
 
Messages
2,391
Location
UK
In very simple terms the medical profession as a whole - most of whom have no in depth or up to date knowledge about research into biomedical factors that are involved in causation of ME/CFS - will continue the physical vs psychological debate (along with dumping ME/CFS into the MUS, FSS barrel) until research can demonstrate consistent and robust pathology that is clearly linked to the symptoms.
So I guess it is a matter of biding our time until that link is discovered. I wonder if, once that point is reached, there will be some chance for restitution.