- Messages
- 2,516
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.
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.
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.