Medical Abuse In ME Sufferers (MAIMES)
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?
(This Page maintained by the MAIMES Team)
Introduction to MAIMES
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. Or if you feel that friends and family could act on your behalf then that would be great too!
Dr Myhill is in contact with very many support groups and is sending out the same message to them. Also, please note that once an MP has been adopted then no one else can adopt that same MP. Hopefully the message below is clear.
HERE IS DR MYHILL'S MESSAGE - Launch Date 8 February 2017
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:
- 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  below for details of this Patient Testimony.
- 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.
- PWME are at best referred to a team in which a psychiatric and symptom suppressing approach is applied. The 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  and  below for details of the harm that has been done to PWME and for details of the debunking of the PACE study.
- 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.
- 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:
- 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.
- Rewriting NICE Guidelines using evidence based medicine that is logical, biologically plausible and with a proper scientific evidence base.
- 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.
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.
- 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 (email@example.com) so that we can make sure that each MP has only one adopter and also to keep a “Master List” of adopted MP’s. Please see map opposite for geographical location of MPs so far adopted and also see the section below on adopted MPs.
- 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.
- Attend your local MPs surgery, explain the above issues, using the information on this website 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 slip as below. If you are successful, please scan the slip and return it to Gail (firstname.lastname@example.org) 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.
- If you cannot convince your MP to sign the slip, please leave them with the more detailed ‘MAIMES letter’ as here - PDF COPY OF DETAILED MAIMES LETTER - and also the copy of the book. Then please do chase them! Please tell Gail (email@example.com) that you were unable to initially convince your MP to sign the slip and then please do keep Gail (firstname.lastname@example.org) up to date with further progress.
 – Patient Testimony – “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” - please see this link - “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”
 – 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 - “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”
Confirmation Slip for MP to sign
HERE IS THE 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:
I am the MP for ……………………………………………………………
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.
- Witnessed by
For you to print off -- PDF COPY OF MAIMES SLIP
Convincing your MP
- Show them the information in the Introduction above - download it here PDF COPY OF MAIMES INTRODUCTION AS ABOVE
- Explain why this is of Public Importance - number of people affected is 250,000 per NHS figures - see here NHS page on CFS
- Explain that the issues surrounding CFS/ME are very complex and that ONLY a Public Inquiry can investigate all these issues satisfactorily.
- Try to find local issues surrounding CFS/ME - the MP must act for their own constituents - look up local support groups.
- Emphasise the impact on children - see this paper Long Term Sickness Absence due to ME/CFS in UK Schools: An Epidemiological Study With Medical and Educational Implications and Special problems of children with myalgic encephalomyelitis/chronic fatigue syndrome
- Please see the links in the "External Links" section below which contain more useful evidence and campaign tools.
- If the MP doesn't sign, even after repeated follow ups as suggested in the section ACTION above, then ask them to put down in writing WHY they will not sign. This can then be used against them at a future date!
- Please keep Gail up to date with all developments even in cases where your MP refuses to sign up.
- Please forward all communication to Gail, even if it is 'negative'. Refusals are important too!
MAIMES Update 23 March 2017
The following MPs have been adopted as at 23 March 2017, subject to any late submissions. Thank you all so much!
AHMED-SHEIKH Tasmina -- Ochil & South Perthshire
BARRON Kevin -- Rother Valley
BLACK Mhairi --Paisley & Renfrewshire
BLOMFIELD Paul -- Sheffield Central
BRINE Steve --Winchester & Chandlers Ford
BROWN Lyn -- West Ham
BROWN Nick -- Newcastle upon Tyne
CADBURY Ruth -- Brentford & Isleworth
CHAMPION Sarah -- Rotherham
DAVIES Chris -- Brecon & Radnor
DAVIES Dr James -- Vale of Clwyd
DAVIES Glyn -- Montgomeryshire
DRUMMOND Flick -- Portsmouth South
DUNCAN Sir Alan -- Rutland and Melton
ENGEL Natascha -- North East Derbyshire
FRANCOIS Mark -- Rayleigh & Wickford
GRAYLING Chris -- Epsom & Ewell
HAIGH Louise -- Sheffield Heeley
HALL Luke -- Yate, Thornbury
HASELHURST Sir Alan -- Saffron Walden
HENDRICK Mark -- Preston
HUNT Jeremy -- South West Surrey
JOHNSON Alan -- Hessle
JOHNSON Caroline -- Sleaford & North Hykeham
KERR Callum -- Galashiels
LANG Eleanor -- Epping Forest
LEADSOM Andrea -- South Northampton
LEIGH Edward -- Gainsborough
LEWELL-BUCK Emma -- South Shields
LUCAS Caroline -- Brighton Pavillion
LYNCH Holly -- Halifax, West Yorkshire
MAK Alan -- Havant
MARSDEN Gordon -- Blackpool, South
MAY Theresa -- Maidenhead
McCARTNEY Jason -- Colne Valley
McDONALD Stewart -- Glasgow South
McNALLY John -- Falkirk
MORTON Wendy -- Aldridge/Brownhills
MURRAY Ian -- Edinburgh, South
OWEN Albert -- Anglesey/Ynys Mon
PEARCE Teresa -- Erith & Thamesmead
REYNOLDS Emma -- Wolverhampton North East
SHANNON Jim -- Strangford
SHEERMAN Bary -- Huddersfield
SMITH Jeff -- Manchester, Withington
SMITH Karin -- Bristol South
SOUBRY Anna -- Broxtowe
STRINGER Graham -- Blackley & Broughton
TREDINNICK David -- Hinkley
TRUSS Liz -- South West Norfolk
TYRIE Andrew -- Chichester & West Sussex
VAZ Valerie -- Walsall South
WEST Catherine -- Hornsey & Wood Green
WILLIAMS Craig -- Cardiff North
WILLIAMS Craig -- Cardiff North
WINNICK David -- Walsall North
MAIMES Update 13 March 2017
COUNTESS MAR has joined MAIMES!
She is very much on our side and we all know what a force to be reckoned with she is! Dr Myhill has been in conversation with Countess Mar and this is what the good Countess says of MAIMES:
- “I am very impressed by your MAIMES campaign and would be very happy to support you.”
- “You, very cleverly, have brought in other conditions like GWS and fibromyalgia, which is just what the doctor ordered! “
- “It is high time that there was an inquiry.”
The second point refers to Mar’s reasoning as to why previous such campaigns have failed. ME has been seen as ‘’too narrow’’ a subject for such a wide-ranging Inquiry. This may well be a wrong perception but we have to give ‘’them’’ what ‘’they’’ want to get the whole thing started!
Countess Mar will be bringing MAIMES to the attention of the Forward-ME group at their meeting on 14 March.
Also, we have our FIRST MP signed up to the MAIMES campaign, supporting the demand for a Public Inquiry into the medical abuse of ME sufferers.
Dr Myhill has persuaded Chris Davies, MP for Brecon and Radnorshire, to put his name behind MAIMES.
Useful External Links
You may wish to print these off and show them to your MP:
- “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”
- “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”
- "Assessment of Individual PACE Trial Data: in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Ineffective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Reported"
- NHS page on CFS - confirming the figure of 250,000 sufferers in the UK
- "Long Term Sickness Absence due to ME/CFS in UK Schools: An Epidemiological Study With Medical and Educational Implications"
- "An open letter to Psychological Medicine about “recovery” and the PACE trial" - Signed by Dr Myhill
- "Special problems of children with myalgic encephalomyelitis/chronic fatigue syndrome"
- "Getting it wrong on Chronic Fatigue Syndrome" - New York Times article on flaws in PACE trial
- Dr Myhill's new book "Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis" (2nd Edition)
PDF copies of useful documents
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