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)
STOP PRESS - GENERAL ELECTION 8 JUNE 2017
With the news of the impending General Election ringing in our ears, and after having taken advice, we are pressing on regardless!
The idea is as follows:
- We carry on as normal, collecting as many slips as we can.
- Maybe some MPs will be more willing to sign in the coming weeks.
- After the election, for those MPs who are not re-elected, then we approach the new MP and try to get them to sign the slip, noting that the previous incumbent had signed
- After the election, for those MPs who are re-elected, then we just carry over their slip.
- And then we also carry on as normal after the election
Introduction to MAIMES
If you would like such a Public Inquiry, 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.
Dr Myhill is in contact with very many support groups and is sending out the same message to them.
- An Adopted MP = this MP has been contacted or is due to be contacted by a MAIMES volunteer. An adopted MP has not yet signed up to the campaign. MAIMES volunteers can still arrange to meet these MPs and try to convince them. See below for more details!
- A Signed Up MP = this MP has signed up to the MAIMES campaign to have a Public Inquiry into the abuse of ME sufferers
- This is a campaign to get MPs to sign slips that will be used to demand a Public Inquiry into the abuse of ME sufferers over the last few decades. This campaign is called MAIMES. [the slip calls for a Public Inquiry]
- 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 first need “adopters” who are physically able to attend their MPs’ surgery and also who feel that they can explain the issues as detailed below in as convincing a manner as possible!
- If you can be such an “adopter” please email your details and your MP’s name and constituency details to Gail (email@example.com)
- Gail will then send the adopter [ie YOU!] a free copy of Dr Myhill’s new book second edition: “CFS/ME – it’s mitochondria not hypochondria”. Your chosen MP becomes 'Adopted' at this stage
- Attend your local MPs surgery, give him/her the copy of the book, show them Chapter 1 and try to convince to them to sign the slip!
- If you are successful, please scan the slip and return it to Gail (firstname.lastname@example.org). At this point your chosen MP becomes 'Signed Up'
- If you cannot convince your MP to sign the slip, please leave them with the more detailed ‘MAIMES letter’ - see below for link to detailed MAIMES letter. Please also continue to contact your adopted MP and try to convince them via sheer persistence!
- If your constituency MP has already been adopted by someone else, then you can still try and convince them - use the information below and either visit your MP or email them. The more people who contact their constituency MPs in this way, the better!
- Also if you want to go in groups to visit your constituency MPs then please do - this will also improve things as it will mean that there is less chance of brain fog getting in the way of persuasion - two heads are better than one!
- Or if you feel that friends and family could act on your behalf then that would be great too!
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
- TELL YOUR MP HOW MANY OTHER MPs HAVE BEEN ADOPTED AND HOW MANY HAVE SIGNED UP - MPs are HERD ANIMALS.There is safety in numbers for them! Presently we have 72 adopted and 5 signed up MPs
- 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 - adopted and signed up MPs as at 18 April 2017
Those in red and 'starred' are "signed up" MPs and those in black are "adopted" MPs
|AHMED-SHEIKH Tasmina||Ochil & South Perthshire|
|ALI Rushanara||Bow & Bethnal Green|
|BALDWIN Harriet||West Worcestershire|
|BARRON Kevin||Rother Valley|
|BLACK Mhairi||Paisley & Renfrewshire|
|BLACKFORD Ian||Ross, Skye and Lochaber|
|BLOMFIELD Paul||Sheffield Central|
|BRADLEY Karen||Staffordshire Moorlands|
|BRINE Steve||Winchester & Chandlers Ford|
|BROWN Lyn||West Ham|
|BROWN Nick||Newcastle upon Tyne|
|CADBURY Ruth||Brentford & Isleworth|
|CHAPMAN Douglas||Dunfermline & West Fife|
|CHURCHILL Jo||Bury St Edmunds|
|**DAVIES Chris**||**Brecon & Radnor**|
|DAVIES Dr James||Vale of Clwyd|
|DRUMMOND Flick||Portsmouth South|
|DUNCAN Sir Alan||Rutland and Melton|
|ELLIOTT Tom||Fermanagh & South Tyrone|
|**ENGEL Natascha**||**North East Derbyshire**|
|EVENNETT David||Bexleyheath & Crayford|
|FRANCOIS Mark||Rayleigh & Wickford|
|GRADY Patrick||Glasgow North|
|GRAYLING Chris||Epsom & Ewell|
|GREEN Kate||Stretford & Urmstun|
|HAIGH Louise||Sheffield Heeley|
|HALL Luke||Yate, Thornbury|
|HASELHURST Sir Alan||Saffron Walden|
|HUNT Jeremy||South West Surrey|
|JOHNSON Caroline||Sleaford & North Hykeham|
|**LAING Eleanor**||**Epping Forest**|
|LEADSOM Andrea||South Northampton|
|LEIGH Sir Edward||West Lindsey, Gainsborough|
|LESLIE Charlotte||Bristol North West|
|LEWELL-BUCK Emma||South Shields|
|LUCAS Caroline||Brighton Pavilion|
|**LYNCH Holly**||**Halifax, West Yorkshire**|
|MARSDEN Gordon||Blackpool, South|
|McCARTNEY Jason||Colne Valley|
|McDONALD Stewart||Glasgow South|
|MONAGHAN Dr Paul||Caithness, Easter Ross, East Sutherland|
|MURRAY Ian||Edinburgh, South|
|OWEN Albert||Anglesey/Ynys Mon|
|REYNOLDS Emma||Wolverhampton North East|
|RICHIE Margaret||SDLP South Down|
|SIDDIQ Tulip||Kilburn & Hampstead|
|SIMPSON David||Upper Bann|
|SMITH Jeff||Manchester, Withington|
|SMITH Karin||Bristol South|
|STRINGER Graham||Blackley & Broughton|
|THOMAS Derek||West Cornwall & Isle of Scilly|
|TRUSS Liz||South West Norfolk|
|TYRIE Andrew||Chichester & West Sussex|
|VAZ Valerie||Walsall South|
|WEST Catherine||Hornsey & Wood Green|
|WILLIAMS Craig||Cardiff North|
|WINNICK David||Walsall North|
|ZEICHNER Daniel||Cambridge City|
MAIMES Update - Hope for ME and Fibro NI shows its support 12 April 2017
We are very pleased that Hope for ME and Fibro Northern Ireland has shown its support for MAIMES.
Hope for ME and Fibro NI is offering Northern Ireland MPs free tickets to its 'Seeking Solutions' conference on 30 May.
Hope 4 M.E. & Fibromyalgia Northern Ireland is a registered charity run by patients and volunteers. It receives no core government funding and relies entirely on small grants and voluntary donations to operate.
Hope 4 M.E. & Fibro
25 Mc Shane's Road
MAIMES Update- Countess Mar signs up - 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)
- Hope for ME and Fibro Northern Ireland
PDF and Word copies of useful documents
- PDF COPY OF MAIMES SLIP
- PDF COPY OF MAIMES INTRODUCTION AS ABOVE
- PDF COPY OF DETAILED MAIMES LETTER
- WORD COPY OF DETAILED MAIMES LETTER - so you can make it more personal and better!
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