Medical Abuse In ME Sufferers (MAIMES)
MAIMES Update 26 April 2018 - 27 MPs signed up and 159 MPs adopted!
We have had our first PARTY LEADER sign up to MAIMES - Sir Vince Cable has signed his MAIMES slip and has said that he hopes to raise our case in Parliament. If you have a LibDem MP and are able to try and convince them to sign up, then now is a good time - you can tell them that their party leader has signed up!
STOP PRESS 26 APRIL 2018!
- MAIMES aims to get a Public Inquiry into the Abuse of ME Sufferers
- What can you do to help?
- EITHER 1- follow up on an adopted MP and try to get them to sign up to the MAIMES campaign [see list below of adopted MPs] [get friends or family to help by all means]
- OR 2- If your MP isn't adopted yet, adopt them, by email or in person [see list of MPs below to check that your MP isn't adopted yet] [get friends or family to help by all means]
- Just email Gail (firstname.lastname@example.org ) and she will tell you what to do
In conjunction with Life the Basic Manual (LTBM), Dr Myhill has produced a YouTube video on the MAIMES campaign. You can see this YouTube video here:
Thanks go to LTBM, whose YouTube channel can be found here:
BREAKING NEWS! UPDATE 20 SEPTEMBER 2017
NICE has made the decision to fully update its guideline on ME/CFS! Please see this link for details:
What does this mean for MAIMES?
It is great news and gives even extra impetus to the campaign!
When you contact your MP, by email, 'phone or in person:
- If you have already been In contact with an MP, and they didn't sign up, please get back in contact with them and tell them all about this NICE review and how this action supports MAIMES
- Make sure you tell them this news!
- Ensure that they know the significance of what NICE is doing - they have accepted that there is enough evidence to question the use of Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) in CFS/ME - this supports the key thrust of the MAIMES campaign.
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 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! Please - we don't want anyone to feel pressurised in any way to do this. Our goal is to make people better not worsen their condition by attempting something they are not capable of. This is why we also suggest family, friends or carers getting involved where this may be 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!
- We prefer the adopter to be able to visit physically but if you are too ill to attend then please email Gail and ask to become an email adopter
- 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 or your carer or anyone could act on your behalf then that would be great too!
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:
- 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. It is not possible to keep the MAIMES DETAILED LETTER completely up to date with new developments and so please do make your own changes, using the documents below in the "Useful External Links" section and also the Word copy of the letter found at the bottom of this page. 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”
See also Useful External Links below for more recent supporting documentation!
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 159 adopted and 27 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 26 April 2018 - 27 MPs signed up and 159 MPs adopted!
We now have 27 MPs signed up to MAIMES. These MPs, who should be congratulated are:
- ANTONIAZZI Tonia
- CABLE Sir Vince
- CAMPBELL Ronnie
- COAKER Vernon
- DAVIES Chris
- DAY Martyn
- DREW David
- GOODWILL Robert
- HAIGH Louise
- HARRINGTON Richard
- HOLLINGBERY George
- HOYLE Sir Lindsay
- LAKE Ben
- LAING Eleanor
- LAVERY Ian
- LEWELL-BUCK Emma
- LYNCH Holly
- NEWLANDS Gavin
- OWEN Albert
- SHANNON Jim
- SHEERMAN Barry
- SIMPSON David
- SIMPSON Keith
- STEWART Bob
- WALKER Thelma
- WARBURTON David
- WHATELY Helen
MAIMES Update 26 April 2018 - adopted and signed up MPs as at 28 March 2018
Those in red and 'starred' are "signed up" MPs and those in black are "adopted" MPs
|ALI Rushanara||Bow & Bethnal Green|
|BACON Richard||South Norfolk|
|BADENOCH Keric||Saffron Walden|
|BALDWIN Harriet||West Worcestershire|
|BARCLAY Stephen||North East Cambridgeshire|
|BARRON Kevin||Rother Valley|
|BLACK Mhairi||Paisley & Renfrewshire|
|BLACKFORD Ian||Ross, Skye and Lochaber|
|BLACKMAN Kirsty||Aberdeen North|
|BLOMFIELD Paul||Sheffield Central|
|BRADLEY Karen||Staffordshire Moorlands|
|BRINE Steve||Winchester & Chandlers Ford|
|BROCK Deidre||Edinburgh, North & Leith|
|BROWN Lyn||West Ham|
|BROWN Nick||Newcastle upon Tyne East|
|BURGHART Alex||Brentwood & Onga|
|BUTLER Dawn||Brent Central|
|**CABLE Sir Vince**||**Twickenham**|
|CADBURY Ruth||Brentford & Isleworth|
|CAIRNS Alun||Vale of Glamorgan|
|CARDEN Dan||Liverpool Walton|
|CARTLIDGE James||South Suffolk|
|CHAPMAN Douglas||Dunfermline & West Fife|
|CHURCHILL Jo||Bury St Edmunds|
|CLARKE Simon||Middlesborough South & East Cleveland|
|CRYER John||Leyton & Wanstead|
|**DAVIES Chris**||**Brecon & Radnor**|
|**DAY Martyn**||**Linthigow & East Falkirk**|
|DE PIERO Gloria||Ashfield|
|DEBONAIRE Thangham||Bristol West|
|DODDS Anneliese||Oxford East|
|DUNCAN Sir Alan||Rutland and Melton|
|EVENNETT David||Bexleyheath & Crayford|
|FRANCOIS Mark||Rayleigh & Wickford|
|FREER Mike||Finchley and Golders Green|
|GEORGE Ruth||High Peak|
|GILDERNEW Michelle||Fermanagh & South Tyrone|
|**GOODWILL Robert**||**Scarborough & Whitby**|
|GOVE Michael||Surrey Heath|
|GRADY Patrick||Glasgow North|
|GRAHAM Luke||Ochil & South Perthshire|
|GRANT Helen||Maidstone & The Weald|
|GRANT Peter||Glenrothes & Central Fife|
|GRAYLING Chris||Epsom & Ewell|
|GREEN Chris||Bolton West and Atherton|
|GREEN Kate||Stretford & Urmston|
|GROGAN John||Keighley & Ilkley|
|**HAIGH Louise**||**Sheffield Heeley**|
|HALL Luke||Thornbury and Yale|
|HARDY Emma||Kingston upon Hull West and Hessle|
|HARRIS Carolyn||Swansea East|
|HAYES Helen||Dulwich & West Norwood (London)|
|HAZZARD Chris||SDLP South Down|
|HENDRY Drew||Inverness, Nairn, Badenoch and Strathspey|
|HERBERT Nic||Arundel & South Downs|
|HOARE Simon||North Dorset|
|**HOLLINGBERY George**||**Meon Valley**|
|**HOYLE Sir Lindsay**||**Chorley**|
|HUGHES Eddie||Walsall North|
|HUNT Jeremy||South West Surrey|
|HUSSAIN Imran||Bradford East|
|JACK Alister||Dumfries and Galloway|
|JENKIN Bernard||Harwich & North Essex|
|JOHNSON Caroline||Sleaford & North Hykeham|
|JONES Darren||Bristol North West|
|KEEGAN Gillian||Chichester & West Sussex|
|KENNEDY Seema||South Ribble|
|**LAING Eleanor**||**Epping Forest**|
|**LAKE Ben**||**Ceredigion **|
|LAMB Norman||North Norfolk|
|LAMONT John||Berwickshire, Roxburgh & Selkirk|
|LATHAM Pauline||Mid Dernyshire|
|LEADSOM Andrea||South Northamptonshire|
|LEIGH Sir Edward||Gainsborough|
|**LEWELL-BUCK Emma**||**South Shields**|
|LEWIS Clive||Norwich South|
|LITTLE-PENGELLY Emma||South Belfast|
|LUCAS Caroline||Brighton Pavilion|
|**LYNCH Holly**||**Halifax, West Yorkshire**|
|MANN Scott||North Cornwall|
|MARSDEN Gordon||Blackpool, South|
|MASKEY Paul||Belfast West|
|MATHESON Christian||City of Chester|
|McDONALD Stewart||Glasgow South|
|McGUINN Conor||St Helens|
|McMORRIN Anna||Cardiff North|
|MORDEN Jessica||Newport East|
|MORGAN Stephen||Portsmouth South|
|MURRAY Ian||Edinburgh, South|
|MURRAY Sheryl||South East Cornwall|
|MURRISON Andrew||South East Wiltshire|
|**NEWLANDS Gavin**||**Paisley & Renfrewshire North**|
|NEWTON Sarah||Truro and Falmouth|
|**OWEN Albert**||**Anglesey/Ynys Mon**|
|PIDCOCK Laura||North West Durham|
|POULTER Dr Dan||Central Suffolk & North Ipswich|
|POUND Steve||Ealing North|
|POW Rebecca||Taunton Deane|
|PRISK Mark||Hertford & Stortford|
|REES-MOGG Jacob||North East Somerset|
|REYNOLDS Emma||Wolverhampton North East|
|RICHIE Margaret||SDLP South Down|
|ROBINSON Mary||Cheadle Hulme South|
|ROWLEY Lee||North East Derbyshire|
|RUANE Chris||Vale of Clwyd|
|SAVILLE ROBERTS Liz||Dwyfor Meirionnydd|
|SEELY Bob||Isle of Wight|
|SHERRIFF Paula||Dewsbury, Mirfield, Denby Dale & Kirkburton|
|SIDDIQ Tulip||Hampstead and Kilburn|
|**SIMPSON David**||**Upper Bann**|
|SMITH Jeff||Manchester, Withington|
|SMYTH Karin||Bristol South|
|SOBEL Alex||Leeds North West|
|STONE Jamie||Caithness, Easter Ross, East Sutherland|
|STRINGER Graham||Blackley & Broughton|
|SWAYNE Desmon||New Forest West|
|SWEENEY Paul||Glasgow North East|
|THOMAS Derek||St Ives|
|TREVELYAN Anne-Marie||Berwick upon Tweed|
|TRUSS Liz||South West Norfolk|
|VAZ Valerie||Walsall South|
|**WALKER Thelma**||**Colne Valley**|
|**WARBURTON David**||**Somerton & Frome**|
|WEST Catherine||Hornsey & Wood Green|
|**WHATELY Helen**||**Faversham and Mid Kent**|
|WIGGIN Bill||North Herefordshire|
|WRAGG William||Hazel Grove|
|WRIGHT Jeremy||Kenilworth & Southam|
MAIMES Update 20 JULY 2017 - Dr NIGEL SPEIGHT ENDORSES MAIMES
Fresh from his victory against the GMC, Dr Nigel Speight is happy to endorse the MAIMES campaign. During an email exchange which covered much ground, Dr Nigel Speight signed off as follows:
"Happy to endorse MAIMEs campaign"
Thank you Nigel and well done in your historic victory against the GMC!
MAIMES Update 12 APRIL 2017 - Hope for ME and Fibro NI shows its support
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 13 MARCH 2017- COUNTESS MAR SIGNS UP TO MAIMES
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:
- "Journal of Health Psychology - Special Issue: The PACE Trial"
- "Trial by Error: David Tuller's E-Mail Exchange With NICE Chief Executive"
- “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
- Life the Basic Manual YouTube Channel
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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