UK - Ireland - Scotland

𝗘𝗖𝗧𝗔 𝗣𝗿𝗲𝘀𝘀 𝗥𝗲𝗹𝗲𝗮𝘀𝗲 𝗶𝗻 𝗿𝗲𝘀𝗽𝗼𝗻𝘀𝗲 𝘁𝗼 𝘁𝗵𝗲 𝗳𝗶𝗻𝗮𝗹 𝗿𝗲𝗹𝗲𝗮𝘀𝗲 𝗼𝗳 𝘁𝗵𝗲 𝗡𝗜𝗖𝗘 𝗚𝘂𝗶𝗱𝗲𝗹𝗶𝗻𝗲𝘀 𝗼𝗻 𝗠𝗲𝗱𝗶𝗰𝗮𝗹 𝗖𝗮𝗻𝗻𝗮𝗯𝗶𝘀.

ECTA and its partners are extremely disappointed with the guidelines released today which have, as anticipated, left patients and physicians in no-man’s-land with regard to the prescription of CBMP (Cannabis Based Medicinal Products) which are being applied with great success in other G7 countries.

CBMP are classed as Unlicensed or Specials medicines and the legislative literature on this type of product instructs all physicians that they "may prescribe unlicensed medicines where, on the basis of an assessment of the individual patient, you conclude, for medical reasons, that it is necessary to do so to meet the specific needs of the patient".

Therefore on the basis that there is a considerable volume of clinical research, and there are currently over 100,000 patients globally using these products successfully and safely, this guidance has fallen well below what many practitioners feel should have been recommended, and a more progressive set of recommendations should have been released.

There is no recommendation for the NHS to allow prescribing of CBMP containing THC, other than the drug Sativex, and yet there are two major conditions - Chronic pain and childhood epilepsy - which have been completely ignored by NICE, despite an abundance of anecdotal and clinical evidence globally, and thousands of patients here in the UK that have tried all other medication without success.

Some are questioning the basis for this guidance when there is clear support from the current government as well as a large number of physicians seeking to access these products in order to treat their chronic condition patients. It has also been noted that NICE deems CBMP products unknown and unsafe while it approves a number of extremely dangerous and highly expensive products with no proof of efficacy and safety that are registered, prescribed and NHS covered as Specials medicines, as well as products, such as Chloral Hydrate, which are prescribed and funded on NHS budgets despite NICE prohibiting its use for the condition in which it is widely prescribed.

It is also disappointing not to see a change in the prescription pathway to ease the plight of chronic condition patients in obtaining a CBMP prescription. Currently the patient must directly approach a specialist clinician at a hospital trust, which has proven to result in a block of prescriptions either through lack of physician understanding, or Hospital Trust budgetary restrictions, with no other option for the patient than to spend thousands of pounds several months obtaining a private prescription.

It is ECTA’s belief that this pathway must be changed, and having worked with a number of MPs and doctors on the GMC specialist register trained in Medical Cannabis, it is clear that the most effective way to achieve access for chronic patients via NHS funding, is to use the standard chronic condition treatment pathway and accept the GP as the first port of call. Following GP evaluation, a co-care treatment plan would be signed off by a specialist physician, and the prescription would be issued by the GP and funded by the local CCG as most other Specials medicines are.

ECTA understands that this pathway is currently being used to fulfill an NHS prescription for a high-profile case in the UK, and given this precedent has been set ECTA would expect the same treatment to be given to the thousands of children and adults who need immediate access to CBMP, and their GP’s who want to fulfill their duty to provide their patients with effective, and in some cases life saving, medication.

 

 

The equality watchdog is considering taking action to tackle discrimination in the way

decisions are made in the social security system, it revealed this morning.
#EHRC #DebbieAbrahams #BenefitDeaths

http://ow.ly/rJQx50wYFuB

 

 

In 2017 Lesley Scott, Tymes Trust Scottish Officer and Trustee, made FOI requests to all five medical schools in Scotland asking for copies of all references within the course literature to any or all of the following terms:
ME; Myalgic Encephalomyelitis;
CFS; Chronic Fatigue Syndrome;
ME/CFS; CFS/ME; ME-CFS; CFS-ME The following is a summary of the response received.

http://www.meresearch.org.uk/wp-content/uploads/2019/09/Summary-of-2017-FOI-responses-from-cottish-Medical-Schools.pdf?fbclid=IwAR2A37iR1KjhaWuo8WLrjBF981h9SL7CZV1jo1C3HMjo2tMmfV9E48sWcHE

 

 

 

Invest in ME August 2019 Newsletter

https://mailchi.mp/e3566d5a200c/invest-in-me-research-newsletter-october-407815?fbclid=IwAR0QcrPauIR1wqGlqhTaQOVbhV11Rp5aiM-xtxWMNGGvmhtZxSMSVpnbHEk

 

 

Psychological tyranny prescribed by the DWP: preventable harm is government policy

Mo Stewart, Br J Gen Pract 2018; 68 (677): 579. DOI: https://doi.org/10.3399/bjgp18X700001

GP’S OPINION OF PEOPLE’S SICKNESS NOW RENDERED MEANINGLESS

Influenced by corporate America, the commonly labelled ‘welfare reforms’ began in July 2006 with the introduction of the Welfare Reform Bill by the New Labour government, and guaranteed that claimants of long-term out-of-work sickness and disability benefit were to be coerced and intimidated by the Department for Work and Pensions (DWP) simply for committing the ‘crime’ of being too ill to work.

https://bjgp.org/content/68/677/579?fbclid=IwAR2CXxNE2wPB-93P3YKZQ6a7ytX5KuUU3DauSmjaaiD88ZLwS_WX-qqU0DI

 

 

24 January 2019, Volume 653

​Carol Monaghan (Glasgow North West (SNP)

https://hansard.parliament.uk/commons/2019-01-24/debates/FA1BBC27-37A7-4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment?fbclid=IwAR2gTHP2ZWCvr-8hVjaHRT3_GzZSlkWiJEyE351lslvNdIewXQA2VDbiCs8

 

 

.

 

Parliamentary Jan 2019

The substantive motion for the debate is:

“That this House calls on the Government to provide increased funding for biomedical research

into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy

and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and

medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and

appropriate management advice to reflect international consensus on best practice, and

Parliamenis concerned about the current trends of subjecting ME families to unjustified

child protection procedures.”

Paul Kayes has drafted a Letter to MPs for House of Commons Debate on ME which you

are welcome to copy/amend for your MP.

http://ldifme.org/parliamentary-debate-on-me-research-and-treatment/?fbclid=IwAR3VLSBM5rAesZNSz2phSQQZq3oi23eOkq7npteptDSybNnH1p9sUwRyL4A

 

 

 

Recognition of fibromyalgia as a disability

This pack has been prepared ahead of the debate to be held in Westminster Hall on Tuesday 15 January 2019 from 9.30-11am on recognition of fibromyalgia as a disability. The debate will be opened by Toby Perkins MP.

Jump to full report

A debate will be held in Westminster Hall on Tuesday 15 January 2019 on the recognition of fibromyalgia

as a disability. The debate will be opened by Toby Perkins MP.

https://researchbriefings.parliament.uk/ResearchBriefing/Summary/CDP-2019-0003?fbclid=IwAR3f7qtmMFJAE9ZkyG34GpVgw5YZjjsqhIDSeukhW_wDj2a3E7TyZQTp3Mw

 

 

Scotland

With three clinics now in operation, NHS Highland plans to open a staffed NHS Near Me clinic at the Belford Hospital in Fort William in early 2019 and a further clinic at the new hospital in Aviemore. In addition, work has begun on offering patients NHS Near Me appointments at home.

https://www.nhshighland.scot.nhs.uk/News/Pages/Boardexpandsvideo-consultingNHSNearMeService.aspx?fbclid=IwAR09Zqcaj3S7eOyIoP646maqaPXHdQS15Li4mKLZXDwKV-2ynf39gBPvMU8

 

 

 

MEDICALLY UNEXPLAINED SYMPTOMS (MUS) IN CHILDREN AND YOUNG PEOPLE -   Aug 2018

A guide to assessing and managing patients under the age of 18 who are referred to secondary care

This Guide is endorsed by the Royal College of Psychiatrists (RCPsych) and the Paediatric Mental Health Association (PMHA)

https://paedmhassoc.files.wordpress.com/2018/12/mus-guide-with-leaflet-nov-2018.pdf

 

 

 

North Ireland  November 2018

“While the potential of cannabis is not yet fully established, there is considerable interest in the use of cannabis for medical purposes among the clinical community, members of the public and others.

The significant work that has been undertaken to date by the Health Products Regulatory Authority (HPRA), the Medical Cannabis Expert Reference Group, and my Department, to advise on and facilitate access for clinicians wishing to prescribe medical cannabis for their patients, has been extremely important and so I am pleased that this vital information will now be publicly available to all. Further developments over time will be added to the repository so it is maintained up to date.

I hope that the information contained in this repository will allow the conversation around medical cannabis to develop and proceed in an informed manner, but always based on the best clinical and scientific information available.”


https://health.gov.ie/blog/press-release/minister-for-health-launches-new-online-information-repository-on-medical-cannabis/?fbclid=IwAR0IxFaUW25gwTPhBhrLl31AOz97xYWC1E0bprszHEkmnC4l8EA5ttMEtqI

 

 

Today, the Government is laying the Misuse of Drugs (Amendments) (Cannabis and Licence Fees) (England, Wales and Scotland) Regulations 2018 (“the 2018 Regulations”) in the House. These regulations reschedule cannabis-based products for medicinal use and will come into force on 1 November 2018.

https://www.parliament.uk/business/publications/written-questions-answers-statements/written-statement/Commons/2018-10-11/HCWS994/?fbclid=IwAR3kxSIskl00gHlxkH5OVDQ9oAUfVZKJoPcvmou3xebSM6q6ARt2T1NuNjM

 

 

Saturday's Still Waiting Ireland National Healthcare Campaign. #Stillwaiting. covered in The Irish Times.

Fellow MEAI member Joan Byrne prominently featured speaking about the neglect of M.E. patients in Ireland at about 38 seconds into the video.  Mighty speaker - gets great points across. Good woman Joan! Also includes Moira. Plus I think I see Keith Murphy carrying the banner.

https://www.facebook.com/noreen.murphy.7777/posts/10156664547618609?hc_location=ufi

Scotland - September 2018
Myalgic encephalomyelitis (ME) is categorised by the World Health Organisation under diseases of the nervous system. The Scottish Government supports this categorisation and it underpins the current Scottish good practice statement on ME.

However, information obtained through Freedom of Information legislation revealed that all five medical schools in Scotland teach ME as if it were a behavioural problem that can be ‘fixed’ through psychological interventions and management regimes such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET). The Scottish Government was recently asked “what action it can take to prevent harm being caused to ME patients as a result of any inaccurate or outdated teaching regarding the condition.”

http://thirdforcenews.org.uk/blogs/if-the-government-wont-take-me-seriously-who-will#p3do62m8xTDDseo5.99

 

 

 

Invest in ME respond to the MRC on Twitter in no uncertain terms:

https://www.facebook.com/opposingMEGA/posts/510139839426402?hc_location=ufi

 

 

August 2018

MRC email updates, yesterday was of a blog piece about the letter, which says it is an extended version (I’ve not read the Times one.). It looks to me as if the first part of ‘Watt’s’ piece was actually drafted by the PACE team themselves, and then a bit of extra about current research plans was tacked on the end. This is showing MRC in a very bad light, and makes me wonder how much I can believe of their briefings on subjects with which I am unfamiliar and must take them on trust. This is both disappointing and disturbing.

https://mrc.ukri.org/news/browse/criticism-of-the-pace-trial/?utm_medium=email&utm_source=govdelivery

 

 

The PACE trial and behavioural treatments for M.E.

August 29, 2018

This statement sets out our position on the PACE trial and behavioural treatments for M.E.

In the past, Action for M.E.’s strategy was to support all forms of research into M.E. As part of this strategy, in 2007 the charity was asked to be involved in a large-scale research project, the PACE trial, which compared standardised specialist medical care (SMC) alone, with SMC plus adaptive pacing therapy (APT), cognitive behavioural therapy (CBT), or graded exercise therapy (GET) for people with M.E./CFS.

Serious concerns about the PACE trial are well documented, with repeated questions raised about its methodology, and the reliability of its results. As reported in The Times newspaper last week, an open letter to The Lancet, signed by more than 100 scientists, clinicians, parliamentarians and patient organisations, including Action for M.E., has been sent three times, asking the journal to reanalyse the trial’s findings.

https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/

 

 

August 23, 2018

The minister for disabled people is refusing to meet a coalition of disabled people’s organisations, in an apparent breach of the UN disability convention.  The coalition wrote to Sarah Newton yesterday (Wednesday) to express its “deep disappointment and concern” about her refusal to meet them to discuss the UK’s failure to implement the UN Convention on the Rights of Persons with Disabilities (CRPD).

The letter, signed by 14 prominent disabled leaders, asks Newton (pictured): “How can the government improve the lives of disabled people if it is not engaging directly with disabled people?”

The UN committee on the rights of persons with disabilities told the UK government last September in its “concluding observations” that it needed to make more than 80 improvements to the ways its laws and policies affect disabled people’s human rights.

https://www.disabilitynewsservice.com/minister-snubs-dpos-and-breaches-un-convention-by-refusing-meeting/

 

Ph.D. Studentship in biomedical research in Myalgic Encephalomyelitis

The Scottish Government is committed to ensuring that people in Scotland living with Myalgic Encephalomyelitis (M.E.) are able to access the best possible care and support.

This commitment includes recognition of the importance of research in increasing our understanding of M.E.,

and in the development of new and effective approaches to diagnosis and treatment of the condition.

The Scottish Government Chief Scientist Office and Action for M.E. are pleased to announce a joint funding

call for Scottish Universities to host a Ph.D. studentship in biomedical research into the underlying aetiology, diagnosis or treatment of Myalgic Encephalomyelitis. Funding of up to £90,000 for a 3 year studentship. It is

expected that this will cover the student’s stipend, Ph.D. registration fees, research costs and a modest travel

budget for attending scientific symposia.

The proposal should be completed using the headings provided on the application form and should be no longer

than a total of 4 pages of text completed in Calibri font at font size 11 with no changes to the line spacing or the margins of the form.  The deadline for receipt of applications is 6th April 2018

https://www.cso.scot.nhs.uk/mephd/

 

 

 

July 24th, 2018

Prof Malcom Hooper writes to Lord Shaughnessy and points out numerous errors the Lord has made in relation to Pace trial and government policy in relation to ME/CFS. (PDF 8 pages)

"Unless the Parliamentary Under Secretary of State Lord Shaughnessy and his DoH cease to support the PACE trial͛s alleged ͞success͟ and recognises it for the scientific fraud it has been shown to be, patients with the devastating disorder ME/CFS will continue to be abused by UK Departments of State.
In the interests of patient safety and also to ensure that no further public money is spent on ineffective interventions, I look forward to Lord O͛Shaughnessy͛s prompt response and to his assurance that he and his Department will desist from supporting ͞research͟ that is so methodologically flawed that it cannot be relied upon to guide public policy. "

http://www.margaretwilliams.me/2018/hooper-to-phillipson.pdf

 

 

July 2018

Please note that GAME does not endorse incorrect terminology.  This should state Myalgic Encephalomyelitis and Chronic Fatigue Syndrome as they are not the same illness. 

Centre for Health & Disability Assessment

These guidelines form part of Atos Healthcare’s programme for continuing medical education for Health Care Professionals (HCPs). They are designed to encourage consistency in our approach to complex conditions; provoke reflection on our own perceptions with regard to them; and foster awareness of current medical thinking.
 

Chronic fatigue syndrome / Myalgic Encephalomyelitis (CFS/ME) is a disorder, or group of disorders, which continues to cause considerable difficulties for clinician and disability analyst alike, due to the absence of clear causative factors, the lack of precise case definition and the variable and uncertain natural history. Since the terms “myalgic encephalomyelitis” and “post-viral fatigue syndrome” both carry implications relating to causation, the generic term CFS/ME is preferred.
 

The purpose of this module is to encourage HCPs working in disability analysis to adopt a common approach to this difficult and complex condition.

https://www.whatdotheyknow.com/cy/request/313702/response/770712/attach/html/4/RED%2013%20MED%20S2%20CMEP%200017%20Mod%206%20Chronic%20Fatigue.pdf.html

 

Scotland July 2018

People with ME who have been harmed by NHS treatments (GET & CBT) can now formally report it using the Yellow Card Scheme.

“It is to be hoped that reports via the Yellow Card Scheme of adverse effects of GET/CBT will feed into the process of replacing the current NICE guideline and provide evidence of what many ME/CFS patients say is the reality of the efficacy of GET/CBT.”

“The Yellow Card Scheme allows the Medicines & Healthcare products Regulatory Agency (MHRA) to monitor the safety of all healthcare products in the UK to ensure they are acceptably safe for patients and those that use them.”

You can make your report here... https://yellowcard.mhra.gov.uk.

UPDATES

1) The MHRA have confirmed that the Yellow Card Scheme can be used to report both current and past treatments.

2) Regarding which option to choose for reporting, we agree that it is very unclear. The article by ME Research UK does say that GET and CBT does not fit easily into the remit of the Yellow Card Scheme, which makes it very confusing. They have contacted the MHRA asking the exact same question and we'll see what the result is.

In the meantime, ME Research UK believe that ‘Devices’ may be the best option... “The term ‘medical device’ covers almost all products, except medicines, that are used in healthcare. They can be used for the diagnosis, prevention, monitoring or treatment of illness or disability. An adverse incident is an event that caused, or almost caused, an injury to a patient or other person or a wrong or delayed diagnosis and treatment of a patient.”.

If you would like to contact the MHRA with questions, you can do so here, and it may help to quote the response from the Department of Health and Social Care from the article.

 https://yellowcard.mhra.gov.uk/contact-us/

 

 

In a Westminster Hall debate on ME treatment and research on 21 June 2018,

Sir Henry Bellingham, MP for North West Norfolk, called for government support for the Invest in ME Research Centre of Excellence for Myalgic Encephalomyelitis.

Sir Edward Davey (Kingston and Surbiton) and Dr. David Drew (Stroud) voiced their agreement, and Steve Brine, Under-Secretary of State for Health and Social Care, said it sounds very promising.

We’ve drafted a letter, which you are welcome to copy and paste or adapt to send your own MP to inform or update them on the progress of the Centre of Excellence and to ask them to support Sir Henry’s call on your behalf.

http://ldifme.org/2018/06/28/dear-mp/

 

Published on Jun 21, 2018

Carol Monaghan MP (Glasgow North West, Scottish National Party) leads the debate on Myalgic Encephalomyelitis treatment and research

Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall debate on treatment and research for ME. 

MPs called for the immediate removal of Graded Exercise Therapy (GET) from the NICE guidelines, as patients have consistently reported being harmed from attempting to undergo this treatment. MP Ed Davey called for the suspension of the GET guideline, suggesting that not doing so risks litigation.

“Never have I felt so heard,” said Sian Leary from Sheffield who has been housebound with ME for the past 5.5 years.

“Today is the day, here, in June 2018, where finally we started to take Myalgic Encephalomyelitis… seriously and we stopped condemning people who suffer from this ghastly debilitating disease,” said MP Stephen Pound, one of the 6 MPs who petitioned for the debate.

“Today is the day we said, “Yes we understand the pain people suffer . Yes we’re going to do something about it. Yes we respect you. Yes we value you. And yes today we’re going to start investing in diagnosis and  analysis and, god willing, cure”. 

https://www.youtube.com/watch?v=mplieUzbOtQ

 

 

Government's universal credit roll-out is unlawfully discriminating against disabled people, High Court rules

Landmark judgment rules Department for Work and Pensions unlawfully discriminated against two severely disabled men who had benefits dramatically reduced when they claimed universal credit

https://www.independent.co.uk/news/uk/home-news/universal-credit-disabled-people-high-court-government-disabled-dwp-a8398241.html

MEAction Scotland

Due to give evidence June 99th in support of our parliamentary petition. Even if you can't attend in person, you can still watch the proceedings as they happen.

BBC Scotland’s Holyrood Live will be covering the Public Petitions Committee tomorrow morning (7th June) when Emma Shorter, Janet Sylvester and Professor Chris Ponting will be presenting evidence to MSPs concerning our MEAction Scotland petition. The meeting starts at 10am.  The livestream will be available here: 

https://www.bbc.co.uk/news/live/uk-scotland-scotland-politics-44355292

In addition to the video, BBC Scotland will also publish a live blog of the discussion, along with background information and any relevant tweets.

 

FORWARD-ME  Minutes of the Meeting held in Residence 1

House of Lords,  Tuesday 1 May 2018, 2.00 pm

http://www.forward-me.org.uk/1st%20May%202018.htm

Medical Abuse In ME Sufferers - MAIMES - CALL FOR A PUBLIC INQUIRY INTO THE ABUSE OF ME SUFFERERS 
MAIMES UPDATE
We now have 29 MPs signed up and 160 adopted.  When we get to 50 MPs signed up, we have been advised that we can start pushing Parliament for the Public Inquiry.  The MAIMES campaign and the Complaint to the GMC about the PACE authors are really working well together and so if you can help on MAIMES, please do mention the GMC complaint!

Map as below = Green for adopted and Purple for signed up. Thank you SO much to the 200+ people who have visited, seen, emailed, and phoned their MPs for us! Please see link 2 section 5 below for detailed list of MPs - clearer than the map!
Useful links:
Full MAIMES page
-  http://www.drmyhill.co.uk/wiki/Medical_Abuse_In_ME_Sufferers 
Simplified MAIMES page - lets you know simply how you can help http://www.drmyhill.co.uk/wiki/MAIMES_SIMPLIFIED 
GMC Complaint page -  http://www.drmyhill.co.uk/.../My_Complaint_to_the_GMC...

Remember - An Adopted MP = this MP has been contacted by a MAIMES volunteer. An adopted MP has not yet signed up to the campaign. MAIMES volunteers can still arrange to meet/email/call these MPs and try to convince them.
A Signed Up MP = this MP has signed up to the MAIMES campaign to have a Public Inquiry into the abuse of ME sufferers.
The date at the top of the map should read 29 May 2018! This will be corrected.

http://www.drmyhill.co.uk/wiki/Medical_Abuse_In_ME_Sufferers

 

A panel of judges has backed the Department for Work and Pensions (DWP) into a corner. So much so that it’s being forced to review the benefit claims of countless disabled people.

https://www.thecanary.co/uk/2018/05/31/judges-just-forced-the-dwp-to-review-the-benefit-claims-of-countless-disabled-people/

 

 

The Public Health Agency N.I.,

has confirmed today that the new Consultant post for a Clinical Lead for ME patients in Northern Ireland is being re-advertised (expected to be within the next week or two), due to an error in the original posting.
From what we can disseminate, the job description remains the same. 
It’s a hopeful time for N.I. patients but a lot of work yet to be done, however, we are delighted severely affected patient’s needs are mentioned in this job description.

https://www.facebook.com/keela.too.9/posts/1047218048760759?hc_location=ufi

 

 

Carol Monaghan

   A parliamentary question from an SNP MP has forced the government to reveal some disturbing facts about its funding for research into a chronic disease. But when put together with other figures, it reveals a crisis in an area of UK healthcare.

A chronic disease

   Glasgow North West MP Carol Monaghan asked a written question of health secretary Jeremy Hunt, in relation to research funding for myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS or ME. It is a chronic systemic neuroimmune disease, affecting an estimated 17 million people worldwide and around 250,000 people in the UK.

   ME has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelievedstigmatised, given incorrecttreatment, or ultimately told it’s ‘all in their heads’. But in recent years campaigning by people living with ME and their supporters has stepped up, with Monaghan being a part of that movement.

   Chronic underfunding

https://www.thecanary.co/discovery/analysis-discovery/2018/05/25/the-truth-about-nhs-research-funding-that-should-shame-the-government/

Scotland

One week left to sign our Scottish petition before it closes on Thursday 31st May. (It can be signed by anyone in any country.) It’s reached over 5000 signatures online, and over 1000 on paper!
Can you give a reminder to friends and family to sign it? By email or sharing online? Every signature matters. And brings us one step closer to the urgently needed change to help improve the lives of people with ME.
Sign here: 

http://www.parliament.scot/GettingInvolved/Petitions/PE01690
The petition calls on the Scottish Government to review the treatment of ME in Scotland with the aim to invest in biomedical research, education and care.
Watch the full video: 

https://youtu.be/wG5g4M7KWv8

Black Dress Day marks the end of ME Awareness Month.

The Black Dress symbolises glamour, a special occasion, celebration, it also reflects loss. More recently The Black Dress has been associated with activism. Many with ME can relate to Oprah Winfrey’s Time’s Up speech at the Golden Globes which focused attention on the culture of bullying and abuse. ME does not discriminate, men, women and children suffer from this debilitating disease. Some are house bound, not able to work or socialise, others bed bound unable to wash, dress and may be tube fed. Black Dress Day, is an opportunity for people with ME, family and friends to say thank you to all who have raised awareness and funds, to remember those lost and to show solidarity. This is not about fashion this is about fighting, for recognition, respect and appropriate treatment. This is taken from an Article written by Eva Wiseman for the Guardian.  https://www.facebook.com/Blackdressday/posts/1797835030272926?hc_location=ufi

Save our Children  &   Empower our Doctors

ABUSE OF ME PATIENTS BY HEALTH CARE PROFESSIONALS  ·  MONDAY, MAY 21, 2018

NICE doesn’t work for us, and medical leaders are either blissfully ignorant or believe too strongly in what they are fed by higher powers.

Meanwhile, children are being harmed. So we need to manage without them. We need a revolt from the ground.  Desperate parents have got together and composed a scorching letter, putting together high quality information and shining a light on all that is wrong in the world of ME. It is very well researched with links to pertinent information and will, or certainly should, enlighten all our Paediatricians to the true facts about ME.

We cannot wait for the establishment to teach our Paediatricians the right information. Not when NICE refuses to see the urgency to remove their harmful recommendations. Not when CFS/ME clinics are run by Psychiatrists and by the lovely Professor Esther Crawley. We have waited long enough. Now it’s time to act. It’s time to empower our Paediatricians with the right information, so that they will make the right decisions for our children.

We need EVERY Brit who reads this to act. Whether you are a parent or not, whether you have a sick child or not, we must come together to save our children. Save our young comrades from being put through even worse hell than what we have to live with.

This is a totally anonymous exercise, there is no risk to anyone involved. It is perfectly safe for you, or your friends and family who help execute this task. This is what you need to do:

Copy the letter below onto your computer, print, and send to EVERY Paediatrician at your local hospital. Note they ALL have to get one. You can find out their names by Googling your local hospital.

This doesn’t have to cost you a fortune in stamps. Simply put them in individual envelopes, with the recipients’ names and department written on, and take it to your local hospital. Their internal mail system will take it from there. Simply ask any member of staff to put it in their internal mail. If you know where the Paediatric department is, take it there and the letters will reach their targets sooner.

https://www.facebook.com/notes/abuse-of-me-patients-by-health-care-professionals/save-our-children-empower-our-doctors/250157552227182/

Scotland.  PE01690: Review treatment of people with ME in Scotland

http://www.parliament.scot/GettingInvolved/Petitions/PE01690

Closing Date for Online Petition: 31 May 2018

Calling on the Scottish Parliament to urge the Scottish Government to review the level of support for people with Myalgic Encephalomyelitis (ME) in Scotland with a view to:

  • Investing in biomedical research and creating a centre of excellence for ME

  • Ensuring healthcare professionals' training and education materials reflect the latest scientific evidence

  • Providing specialist care for patients and discontinuing the harmful treatments graded exercise therapy (GET) and cognitive behavioural therapy (CBT).

Some great news from the Scottish Parliament about our petition - Emma Shorter, on behalf of MEAction Scotland, has been invited to meet with the Petitions Committee and give oral evidence on Thursday 7th June. 
This is earlier than we expected and not every petitioner is asked to give evidence, so we are delighted that we'll have this opportunity to discuss the issues with the Committee. 
Members of the public will be able to book tickets to view the committee meeting in the public gallery. It will also be broadcast on the parliamentary TV channel and a transcript recorded. 
Purpose of the meeting: 
The purpose of the meeting is for the Committee to give our petition initial consideration and decide what action to take. We will give a five minute introductory speech and the Committee will then ask questions - the whole session should last around thirty minutes.
Professor Chris Ponting, Chair of Medical Bioinformatics at the University of Edinburgh, will join our team at the meeting to talk about the need for biomedical research on ME. 

What happens after the meeting:
Following the meeting MSPs may then write to experts and stakeholders for further advice. We are submitting a list of experts and stakeholders for them to contact. We will be given copies of all the stakeholder submissions and will have the opportunity to comment on them. 
How you can help: 
We will be posting the names of the MSPs on the Committee and asking you to contact them if you live in their constituency. We’ll shortly provide some information for you to send them, and a template email you can adapt. We know how important contact from constituents is for MSPs, so we are really hoping this will make a strong impact.

A robot for Makayla Nunn

https://www.facebook.com/PrioryCSA/videos/vb.252552485151704/366050323801919/?type=2&theater

 

From today's edition of "The Brief" published The Times newspaper (UK):

"BANKER WINS CHRONIC FATIGUE SYNDROME [sic] CASE

   A financier who said he could not do his job because of chronic fatigue syndrome has won a High Court claim against an insurance company.

   Charles Miley, 51, started work for Piper Jaffray as head of institutional equity sales in March 2006 and became entitled to cover provided under a permanent health insurance scheme now operated by Friends Life.

   After Miley contracted a chest infection in 2008, he was diagnosed with glandular fever, struggled to work and was repeatedly signed off as sick because of his reports of debilitating fatigue.

   In 2009 he made a claim under the policy, but in September 2013 four years later the insurer stopped paying, asserting that Miley had significantly misrepresented the level of his symptoms.

   He brought legal proceedings to recover the money that he claimed he was owed. In the High Court yesterday, Mr Justice Turner said Miley, of Rugby, was entitled to payments up to July 26 this year.

   The judge added that Miley "has discharged the burden of demonstrating that he suffers from [chronic fatigue syndrome] at a level sufficiently debilitating to entitle him to the requisite benefits under the policy. I find that he has not deliberately fabricated or exaggerated the extent of his disability and that his subjective assessment of the severity of his condition is not materially worse than the objective truth".

https://www.facebook.com/valerie.eliotsmith/posts/10154683267356883?hc_location=ufi

IMPORTANT WARNING FOR ALL UK ME and MUS PATIENTS!

The whole ME community should be made aware that in England now any ME (or indeed MUS) patients who agree to join the IAPT (Improving Access to Psychological Therapies) programme are being deliberately clinically coded as having somatization disorder under ICD-10 F45.0 . Report on Integrated IAPT services pilot - NHS Digital (NB The ‘pilot’ is actually the beginning of the IAPT MUS roll-out, it won’t come to an end).

All patients on the programme who are deemed to have ‘MUS’ or medically unexplained symptoms are coded in this way, regardless it seems of what symptoms, or how many symptoms, they have. This is not just ‘business as usual’ for the BPS School. Once patients have this code on their medical record they will be regarded as somatizers and resource wasters for whatever symptoms they present to any doctor with. This is being done to stop patients accessing investigations and treatment in order to save £billions from the NHS budget. It is the fulfilment of their proposal outlined in this 2011 document - Medically Unexplained Symptoms (MUS) - London Health Programmes

where they proposed using a 16H coding for all MUS patients to exclude them from care. The ICD-10 F45.0 coding for ME/CFS patients goes against the WHO classification but the Government appears to be insisting that it is still adhering to the WHO classification. It seems that they say one thing and do another.

Report on Integrated IAPT services pilot - NHS Digital

VERSUS

https://hansard.parliament.uk/Lords/2017-07-04/debates/4948C210-9F51-4C17-8844-D974766C636C/HealthMedicallyUnexplainedSymptoms

Dr Myhill’s vs PACE  https://www.youtube.com/playlist...

ME Research UK  March 23

Exciting Job Opportunity - CEO of ME Research UK

ME Research UK is seeking to appoint a dynamic and ambitious Chief Executive Officer (CEO) to successfully lead the charity through our next phase of growth and development.

Full details of this newly created role, detailed job specification & application form are now availablehttps://bit.ly/2DPDmSJ

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