News & Updates
FORWARD-ME 2021 REVIEW
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NEW NICE GUIDELINES ON ME: FORWARD-ME STATEMENT & MEDIA SUPPORT - Oct 29th 2021
NICE Publishes new Guideline on ME/CFS*, driving major improvements in care
Press Statement from Forward-ME, embargoed until publication of NICE guideines.
Doctors, and people with ME* welcome the new NICE guideline on ME/CFS, which brings major improvements to the diagnosis, management and support for people with ME.
The new guideline on ME/CFS sets out a significant change in approach:
- Recommending ‘Energy Management’ techniques to avoid ‘Post-Exertional Malaise’ and exacerbation of symptoms. This approach recommends people with ME plan their physical and cognitive activities to stay within their energy limits, incorporating rest where necessary. This is also known as ‘Pacing’.
- Maintains the use of Cognitive Behavioural Therapy (CBT) only to help people cope with the distress which can accompany a long term condition, but recognises that CBT cannot cure ME.
- Child safeguarding is significantly improved. Some parents of children with ME have been subjected to inappropriate child protection orders, and threatened with the removal of their children, in the belief that the parents had caused a ‘fabricated or induced illness’.
The recommendations on ‘Energy Management’ will also help people with LongCovid who experience Post-Exertional Malaise (PEM), many of whom have reported that ‘Graded Exercise Therapy’ worsened their condition, and their symptoms were dismissed as anxiety.
This recommendation is a clear break from the past. Previously, people with ME were offered ‘Graded Exercise Therapy’ (GET), based on a hypothesis that they were deconditioned. NICE found the evidence for this to be poor quality, and many people with ME reported that GET caused serious harm.
The new guideline on ME/CFS was due to be published in August, but NICE ‘paused’ the release following intervention from some clinicians. After a round-table with representatives from the ‘Royal Colleges’ and ME charities, NICE is now confident that the guideline can be fully implemented.
“The new NICE guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that in the future, children and adults with ME will receive an improved standard of care and support.” (Sonya Chowdhury, CEO, Action for ME)
“We hope and believe the Guideline will provide much needed stimulus for substantial, publicly funded biomedical research into the causes, consequences and treatment of this disease.” (Jonathan Davies, ME Research UK)
“This is a very special day for people with ME – publication of a new evidence-based NICE guideline which confirms that this is a serious and very debilitating medical disease. I welcome the emphasis on early and accurate diagnosis and the need to provide early guidance on symptom management when people are not recovering from a viral infection and a diagnosis of ME is suspected.” (Dr Charles Shepherd, Medical Advisor, ME-Association)
“The Guideline should drive better acceptance of ME as serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.” (Dr David Strain, Medical Advisor: Action for ME)
- ME/CFS, short for ‘Myalgic Encephalomyelitis’/ ‘Chronic Fatigue Syndrome’, is a chronic disease characterised by long-term, debilitating loss of energy, often accompanied by pain. The defining symptom of ME is ‘Post-Exertional Malaise’, the disproportionate worsening of symptoms after exertion that can last days, months or years.
- People with ME often experience other symptoms such as cognitive dysfunction (known as ‘brain fog’), heart rhythm disorders and neurological effects. People with severe ME can be bed-bound for years, with hyper-sensitivity to light and sound. Some require tube-feeding.
- There is currently no cure for ME, but effective management can reduce symptoms.
- ME charities avoid the phrase ‘Chronic Fatigue Syndrome’ because ‘fatigue’ under-represents the severity of the disease and ignores many of the symptoms.
- Forward-ME represents national ME charities, co-ordinating activity to support people with ME.
FINAL STATEMENT FOLLOWING THE NICE ROUND TABLE ON ME - Oct 22nd 2021
On Monday, Forward-ME and member charities attended a round table to review the new ‘NICE guideline on ME/CFS’ with representatives from NICE and clinical groups.
The meeting followed the Chatham House Rule, meaning that we cannot attribute comments to individuals. This ensured that all groups were able to speak freely.
The round table reviewed the thorough work of NICE and the guideline committee in assessing the evidence. There was clear acceptance of Post-Exertional Malaise (PEM) as a key marker, which distinguishes ME from other causes of chronic fatigue. A number of clinical trials omitted this requirement.
NICE presented the detailed evidence review, highlighting the lack of meaningful evidence to support Graded Exercise Therapy (GET), as defined by a number of trials including PACE. The round table heard reports of the harm caused by GET, and it was noted that some clinics still follow this practice. It was recognised that the guideline rejected the ‘deconditioning hypothesis’ of ME.
The meeting noted the lessons of the Cumberlege review, and the need to acknowledge patient experiences when they report harm.
NICE detailed the rationale for recommending ‘Energy Management’, established in the new guideline. This approach, undertaken collaboratively with patients, can improve outcomes while avoiding the harm often reported from past interventions. This is a key aspect of the guideline.
Many children with ME have been subjected to child protection processes for declining treatment plans or missing school. There was concern that ME be distinguished from ‘Fabricated and Induced Illness’ (FII), to avoid unjustified child protection orders against parents. The rationale in the guideline was explained, and the meeting discussed a number of cases which illustrated the challenges of safeguarding. This area may be further re-enforced.
There was broad support for the recognition in the new guideline that CBT does not cure ME. This counters past hypotheses that ‘abnormal illness beliefs’ underpinned the disease. While CBT may help some ME sufferers to deal with the distress that can accompany the disease, it is not curative.
People with ME need to be supported by clinicians with relevant training, ensuring that management of the disease is effective and safe. The meeting heard that supporting people with ME is a separate specialty from rehabilitation from other causes, and the need for improved education was recognised.
Attendees highlighted potential challenges in resourcing and commissioning the services recommended in the new guidelines. Concerns were raised that this could result in decommissioning of some existing ME clinics, and future clinical models were discussed.
NICE planned to review feedback from the roundtable, and has since announced that it will publish the guideline following a meeting of its Guidance Executive next week.
Charities attending included: Forward-ME, 25% ME group, Action for ME, #ME Action UK, The ME Association, ME Research UK, the ME Trust, Science for ME and the Tymes Trust.
STATEMENT FOR PEOPLE WITH ME: Oct 11th 2021
Forward ME and our members want to thank the many people with ME, Doctors and researchers who have contacted us to share concerns and frustrations around the delays to publication of the new NICE guidelines on ME.
Forward-ME has been invited to the round table, and the following organisations will also attend individually: ME-Association, Action for ME, #MEAction UK, Science for ME, ME Research UK, The 25% ME Group, Tymes Trust, ME Trust.
Preparations for the round table mirror the issues raised by the ME community across social media. The charities are grateful for all the feedback we have received.
The round table is an opportunity to ensure the rigorous work of the NICE guideline committee is understood by care providers.
We are not attending to discuss changes.
All Forward-ME members recognise the significance of the recommendations in the new guideline.
The guideline has been produced and approved in accordance with NICE’s rigorous procedures, and should be published.
We share the frustrations over the delay, and are working to achieve urgent publication
We look forward to updating the ME community in the days following the round table, and we hope this is accompanied by swift publication.
AN INTERVIEW WITH WILLY WEIR - September 2021
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RESPONSE TO ‘PAUSE’ IN NEW NICE GUIDELINES
ME CHARITIES BAFFLED BY DELAY TO NICE GUIDELINE
Statement on the delay to publication of the NICE Guidelines on diagnosis and management of ME
On Behalf of: Forward ME, Action for ME, ME Association, Doctors for ME, ME Research UK.
We are shocked and hugely disappointed to hear that the long-awaited NICE guidelines have been unexpectedly delayed at the last minute.
The new NICE guidelines bring clinical practice up to date with current scientific knowledge regarding ME**. Delays will hold-off still further the desperately needed improvements to patient care.
Many medical professionals, researchers and patient representatives have spent 3 years diligently reviewing and assessing the evidence.
The document has been approved by the committee and should be published.
The document removes support for therapies driven by outdated views regarding treatment for ME which are no longer supported by the science. We understand these new guidelines may take time to become accepted by elements of the medical community, but they should not be delayed.
No minority party should be able to undermine the careful scientific consensus established by the NICE committee and the rigorous work that has been undertaken in good faith.
We urge NICE to publish this important work without delay, so doctors can get on and support patients with this often devastating disease.
Ms Nina Muirhead, head of medical education, Doctors for ME said: “Doctors are in desperate need of improved support in how to care for patients, delaying that prolongs unscientific approaches which have no place in our medical community”.
Said Sonya Chowdhury of Action for ME: “We are in the dark about this. The NICE committee has worked hard to produce balanced guidelines which reflect science and best medical practise. Nobody should be able to undermine that.”
NOTE: **also know as Chronic fatigue syndrome
— — — END — — —
|Countess of Maremail@example.com||(General)|
|Dr Charles Shepherd||Charles.firstname.lastname@example.org||
|(Guideline development; medical)|
|Ms Nina Muirheademail@example.com||
(Head of Education)
|Sonya Chowdhuryfirstname.lastname@example.org||(Children and young people)|
NEW NICE GUIDELINES - FME PRESS RELEASE
A BRIGHT NEW CHAPTER IN THE HISTORY OF ME* say ME CHARITIES
Britain’s ME charities said the publication today of a new NICE guideline on the illness has given the medical community a chance to reshape its troubled history.
“For too many years, sufferers have been relegated to the side-lines of medical care by being told that their illness is “all in the mind”. The new NICE guideline on ME/CFS, published today, gives doctors a chance to change all that,” said Forward-ME, an alliance of the country’s main ME charities, support groups and health professionals.
“The guideline turns a new chapter in the history of ME
“It emphatically states throughout the message that Myalgic Encephalomyelitis, is a complex and often long-term MEDICAL disease albeit with causes that are still being investigated. People with ME should now be able to access the whole range of health professionals in our incredible NHS to learn about effective forms of management and maybe, one day, a successful and safe treatment.”
An estimated 260,000 children, young people and adults in the UK suffer with this multi-system illness – with many no longer maintaining any contact with their doctors after being told that all the NHS can offer is cognitive behaviour therapy (CBT) and graded exercise therapy (GET).
Forward-ME said the new guideline contains major improvements to the prior version, published in 2007. In particular, members welcomed the abandoning of GET as a frontline treatment.
Founder Forward-ME chairman Margaret, Countess of Mar, a leading ME advocate in the Westminster Parliament until her retirement in 2020, commented:
“The abandoning of graded exercise therapy as treatment for ME is a major achievement for everyone with the illness. For years, patients have been telling the charities that the use of GET, with its goal-setting challenges, has plunged them back into ill-health.
“We so welcome the new sensible guidance on activity and energy management, with patients being allowed time for their bodies to help to heal themselves. It’s long overdue.
“There’s also now very clear guidance that healthcare professionals should recognise the special needs of children and young people, and those with severe ME – who are often left with no medical care at all. Home visits by doctors are vital for the severely affected. Improved guidance on education including online education is welcomed. We hope this will lead to a reduction in the number of cases of parents being accused of psychologically harming their own children.
The Countess added: “While the guideline is a great improvement on the previous one, much still remains be done to improve care for ME patients and the charity sector is very keen to be involved in the development of new clinical services with a fresh approach. But we now need to know what action the Government are planning, and what funding will be made available, to ensure the recommendations percolate through to working practice.”
Forward-ME also has some concerns including that:
- The initial recommendation in the draft was that cognitive behaviour therapy should not be used as a treatment or cure for ME, it appears to have been watered down by repeating that it is not curative but offering treatment advice after pressure from some stakeholders and members of the guideline development
- The fact that ME is classified as a neurological disease by the World Health Organisation, SNOMED and NHS Digital is not mentioned until page 81 of the guideline – this important recognition provides a passport to other NHS services it needs to appear at the beginning of the first main section.
- The guideline fails to recommend that specialist ME services in the NHS should be led by physicians – so these referral services could still lack meaningful medical input
Forward-ME added: “This is a chance to turn that new chapter together. Patients and their families are not asking for special treatment – just that parity of respect and care already enjoyed by other service-users within the NHS.”
*Forward-ME members unanimously agree that chronic fatigue syndrome (CFS) fails adequately to describe the severity of the disease and should no longer be associated with ME therefore we use the term “ME” except when referring to the guideline or other published document which uses alternative terminology.
|Countess of Maremail@example.com||(General)|
|Dr Charles Shepherd||Charles.firstname.lastname@example.org||(Guideline development; medical)|
|Ms Nina Muirheademail@example.com||
(Head of Education)
|Jonathan Daviesfirstname.lastname@example.org||(Head of Research)|
|Helen Brownlieemail@example.com||(Severely affected)|
|Sonya Chowdhuryfirstname.lastname@example.org||(Children and young people)|
|Russell Fleming||Russell.email@example.com||(Advocate and long-term sufferer from ME)|
FOR FURTHER INFORMATION PLEASE SEE THE FORWARD-ME STATEMENT ATTACHED.
NEW NICE GUIDELINES – FME RESPONSE
Forward-ME response to the NICE Guideline for Myalgic encephalomyelitis(encephalopathy)/chronic fatigue syndrome
Forward-ME is a non-charitable collaboration of some 30 representatives from the main ME charities, support groups and medical profession.
N.B. Members of Forward-ME have unanimously agreed that the term ‘chronic fatigue syndrome (CFS)’ is not an appropriate descriptor for the severity of this disease. Except when referring specifically to the NICE guideline CFS will not be used.
Forward-ME welcome the new NICE Clinical Guideline and hope it will lead to improved healthcare provision and better relations between healthcare professionals and people with ME.
There is still a long way to go before we truly understand what causes and perpetuates this neurological condition, and we encourage researchers and funding bodies to prioritise investigations particularly in those areas highlighted by the guideline’s research recommendations.
The key message the guideline carries is that ME is a medical condition that requires a biomedical approach. It is not a biopsychosocial (BPS) condition. We hope that the new guideline will signal a change in some attitudes, just as there has been for diseases such as epilepsy, MS, diabetes, and Parkinson’s in the past.
We hope that with this new guideline health and social care professionals, clinical commissioners, charities, and people with ME will all work together to improve healthcare provision and make our incredible NHS accessible to all.
The guideline represents a new chapter in the history of ME. There is no place for those who perpetuated the stigma and misunderstanding that has caused so many people to suffer.
We look forward to working closely with patients, carers, health and social care professionals, commissioners and researchers to implement these recommendations and build a brighter future for people with ME.
We were pleased when NICE agreed to review their 2007 guideline for ME/CFS in September 2018. We appreciate the care with which the Guideline Development Group have managed an extraordinarily complex assignment.
- We found the following to be particularly helpful:
- They respect patients in a way that is compassionate and just.
- They have understood the needs of the patient community and have recognised most of their needs.
- The special emphasis placed on the needs of children and young people is welcome.
- The recognition that safeguarding is important and that children and young people or those who are severely affected might be in a situation where symptoms are confused with abuse or neglect.
- NICE gives firm directive for informed consent and patient-centred care. It is important that people with ME (and their family members) are completely involved and have a right to refuse care without it affecting future care in any ongoing relationship with healthcare professionals.
- The emphasis placed on early and accurate diagnosis and the recommendation that people with suspected ME begin diagnostic assessment within weeks of symptoms appearing.
- NICE no longer recommend that ME can be treated effectively using cognitive behaviour therapy (CBT) and graded exercise therapy (GET); that exercise needs to be approached with caution, and these therapies are not curative.
- The guideline proposes that people affected by ME take care to conserve energy and employ safe approaches to energy management
- Also, importantly, NICE recognise the need for continued training and education and healthcare professionals.
- We are pleased that specialist teams are commonly led by medically trained clinicians from a variety of specialisms. We agree that all specialist services should be led by medically trained physicians/doctors or consultants. This would help reduce regional health inequalities in medical care for this disease.
- We are pleased to see that the areas for research recommended by NICE, which highlight the inadequacies of current medical knowledge, are key.
- We have the following concerns:
- There is no acknowledgment that ME is classified by WHO and SNOMED-CT as a neurological disease; the latter mandated within NHS England and being implemented in NHS Wales, NHS Scotland and NHS Northern Ireland. These classifications are important, not only legally to healthcare providers to ensure correct implementation of the protocols, but also to people who have ME because it helps to validate the illness, encourage medical awareness and reduce the stigma that is still experienced.
- The November draft contained clear statements to the effect that ‘CBT is not a treatment or cure for ME/CFS’ and ‘Do not offer CBT as a treatment or cure for ME/CFS’. These statements have been excluded from the current guideline and we feel they should not have been.
- The final guideline states that CBT can be used to help symptom control, though there is no evidence of effectiveness that was considered by the guideline committee. It confirms that CBT does not assume that people have “abnormal illness beliefs”, but it appears to leave the door open to accept this as an explanation for symptoms. We feel this is wrong
- The highly respected Oxford Handbook on Psychotherapy Ethics says therapists must clearly distinguish between CBT that helps patients cope with disease and CBT that places responsibility for the illness on the patient. They must recognise that it is legally and ethically unsustainable to provide the latter where it is possible that patients suffer from disease.
- We appreciate that CBT may sometimes be helpful when learning to cope with long-term debilitating illness, but we cannot understand why the ME guideline contains two convoluted pages of advice about CBT when the guideline for multiple sclerosis (CG186), for example, carries a single sentence. It is also too open to misinterpretation that will negate the intention of the guideline.
- Whilst GET is expressly excluded, the introduction of ‘exercise programmes’ with no explanation of what they could or would involve and no evidence of safety or efficacy in the evidence gathering process leaves open the possibility of further misinterpretation of the guideline or mere rebranding of current practices that will negate the Committee’s work. This risk is particularly the case where alternative diagnoses such as functional neurological disorder (FND) are assumed that incorrectly assume diagnostic equivalence. The amended guidelines now risk a very probable contribution to this problem.
- For the future:
- It is for the funders to prioritise funding for ME research and to ensure that research is of the highest scientific and ethical quality. It is for medical, educational and social welfare practitioners to ensure that people with ME are listened to, that they are treated respectfully and lawfully.
- There is no place for confrontation or division that has existed between the physiological scientific consensus and those who believed that ME is a BPS condition.
We look forward to working closely with all those concerned about ME including patients, carers, medical practitioners, or researchers to build upon the science to create a future where ME is accepted, treated appropriately and people with ME truly cared for.
|MEMBERS OF FORWARD-ME|
|Chair: Andrew Morris||Vice-Chair: Carol Monaghan MP|
Dr Charles Shepherd
Baroness Scott of Needham Market
|Action for ME||Dr Nina Muirhead|
|ME Research UK||Dr Nigel Speight|
|TYMES Trust||Dr William Weir|
|BRAME||Countess of Mar (Founder)|
|reMEmber||Doctors with M.E.|
|ME Trust||Physios for ME|
CMRC/PAG (Patients Advisory Group)
|25% M.E. Group|
For full member information see: https://forward-me.co.uk
ME SERVICE IN THE NHS
reMEmber’s observations on the ME/CFS services in the NHS
- These services were set up more than ten years ago but there has been no national review of them. The model was not to our liking from the start. Our preferred model would have been along the lines of that formerly run by Professor Tony Pinching at Barts, with a consultant who would see all patients referred to the service, who could prescribe medicines, and backed up by a small team of experts eg occupational therapist, community nurse.
- There is not comprehensive coverage. Some places have never had a ME/CFS service. In other places there was once a service which has now closed down. We believe that there is no service at all in Wales and not much in Scotland.
- Some clinics have no doctor attached. In others there is a doctor but he or she may be only part-time. GPs with a Special Interest have been shown not to be the answer; patients need to see an expert doctor, but many do not see a doctor at all at their ME/CFS clinic.
- The deficiencies in these services were highlighted in two important reports in 2017. “Specialist treatment of CFS/ME; a cohort study among adult patients in England” by Bristol University found that two-thirds of patients seen by those services reported, after one year, that their condition was only a little improved, unchanged or worse. Five years after being seen 85% of these patients reported they still had CFS/ME, 9% said they were uncertain and only 5% said they no longer had the condition.
- The second study “Spotlight on specialist services; UK healthcare for people with ME”, produced by AFME found that less than half of the Clinical Commissioning Groups (CCGs) and their equivalents in Northern Ireland, Scotland and Wales commissioned a specialist service for CFS/ME and less than a third recorded any data on how many people in their area had the illness.
- Early, accurate diagnosis is essential, but patients are not seen early enough and there is a high rate of misdiagnosis by GPs (40% at Newcastle and Barts for example)
- Many centres have no domiciliary service or provision for the severely affected who cannot get to an out-patient facility. There is nowhere with an in-patient facility for ME/CFS patients and the ME/CFS clinics do not provide for children with the illness.
- Therapy in the centres is almost entirely CBT or GET (because of NICE and PACE). There are some exceptions; when Dr Amolak Bansal (Immunologist) led the South West London and Surrey service they offered Vitamin B12 by injection, Vitamin D3, mindfulness meditation, hormones including melatonin for sleep disorders, antivirals, antibiotics and Pacing – the therapy preferred by most ME/CFS people. A key point was that these therapies were offered on a personalised basis (not “one size fits all”). We attended their tenth birthday party in 2016; a number of past patients were there, and all said how improved they felt in mind, body and spirit – they knew they were not cured but they were able to manage their condition much better.
- reMEmber has, on a number of occasions, brought these shortcomings to the attention of the DHSC and NHS England. Sir Nicholas Soames, when an MP, and the Countess of Mar have both asked Questions on our behalf in Parliament, but the answer is always the same – that provision for CFS/ME is a matter for the local Clinical Commissioning Groups (CCGs). Our attempts to engage CCGs on this subject have been unsuccessful; looking at ME provision seems to be very low down on their list of priorities.
- However, with the re-organisation of Forward-ME and with the new NICE Guideline in mind, now may be a good time to focus the Health Departments once more on this subject. A united Forward ME would carry much more weight than an individual charity. We suggest pressing for a thorough review of the ME/CFS services within the NHS with a view to establishing a comprehensive, nationwide service. reMEmber recommends:
- All patients to be examined by an expert consultant physician
- Prompt, accurate diagnosis
- A domiciliary service for the severely affected
- A dedicated service for children and young people with ME/CFS.
- Multi-disciplinary teams in all centres
Janice and Bill Kent
POSITION STATEMENT (2021 NICE Guideline Update)
2021 NICE Guideline Update on Treatment and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
On the 10th of November 2020, the National Institute for Health and Care Excel- lence (NICE) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). NICE has updated its 2007 recommendations on the use of psycho-behavioural treatments for ME/CFS, concluding that Graded Exercise Therapy (GET) should no longer be offered to patients and that Cognitive Behavioural Therapy (CBT) is not a treatment or cure for ME/CFS.
Doctors with M.E. (DwME) welcomes and supports this change in treatment recommendations, and we await publication of the final guideline in August 2021. NICE undertook an extensive evidence review and consultation process that involved a wide range of stakeholders, including many clinical experts and patient groups. DwME fully supports NICE’s decision to no longer recommend GET as treatment for ME/CFS. Unstructured exercise or exercise programmes developed for the rehabilitation of patients with other conditions are also not recommended. There is now considerable evidence showing that GET is an ineffective treatment for ME/CFS. Furthermore, there is widespread evidence that GET is harmful – ME/CFS patients suffer a worsening of symptoms and/or chronic deterio- ration in disease severity after undertaking GET.
We concur that CBT is not a treatment or cure. Psycho-behavioural therapies are premised on a refuted model in which ME/CFS is the result of patients holding on to ‘false illness beliefs’ and is perpetuated by patient’s ‘fear avoidance of exercise’. This ‘biopsychosocial model’ of ME/CFS has arguably led to decades of acrimony between the medical professionals who advocate this approach and patients, which has caused considerable distress to many people living with ME/CFS worldwide. Current scientific understanding demonstrates that ME/CFS is a complex multi-system biological disease that profoundly impacts the lives of sufferers, causing disabling symptoms such as extreme fatigue, pain, cognitive impairment, orthostatic intolerance, sleep disturbance and post-
exertional malaise (PEM) /post-exertional symptom exacerbation (PESE). Many patients with the disease stop seeing doctors after encountering disbelief and lack of under-standing.
DwME considers the 2021 NICE guideline to be a watershed moment in the history of ME/CFS medical care in the UK. The new guideline supports a change in ME/CFS treatment towards evidence based foundations, away from psychological therapies and adopting a more physiological and patient-centred approach. There is an opportunity for doctors and patients to come together to develop more concordant and productive relation- ships, whereby GPs and other specialists are supported in offering symptom treatment and compassionate care to people living with ME/CFS.
The removal of GET as a recommended treatment and the downgrading of CBT to being no more than a supportive therapy paves the way for a new era in ME/CFS scientific inquiry and improved clinical care. The Covid-19 pandemic has demonstrated in stark terms that viral illnesses can result in post-viral syndromes that linger for long periods and debili- tate patients. There has been huge demand for appropriate ‘Long COVID clinics’ laying bare the gaps in the existing model of care and the shortcomings of psycho-behavioural thera- pies. DwME will be monitoring research developments in this field. We hope that improved understanding of Postacute COVID-19 Syndrome or ‘Long COVID’, together with the revised NICE guideline for ME/CFS, will act as an impetus for funding bodies to support more high quality biomedical ME/CFS research studies and improved clinical care.
The ME Association regularly updates its information on all aspects of COVID vaccination and collects feedback on adverse reactions.
The latest update, which was published on Sunday 16th May 2021, can be found HERE.
This also includes an update (from the same date) on the situation regarding second dose reactions.
Trying to get into meaningful correspondence with the JCVI on the subject of group 6 eligibility for people with ME/CFS has been a real uphill struggle.
And as far as issuing any form of an alert or investigation into what is happening to some people with ME/CFS, the JCVI will almost certainly pass this to the MHRA – who will want to see evidence from the Yellow Card reporting system that these reactions are occurring.
At the moment the MEA is collecting the evidence and continuing to alert people with ME/CFS that, as with any vaccination, there is a risk that this can cause an exacerbation of ME/CFS symptoms. In a smaller number of people there may be a more severe and persistent exacerbation or relapse to a COVID vaccine.
The MEA’s general guidance on COVID vaccines and ME/CFS can be found HERE.
It is nearly 13 years since Forward-ME was founded with a core group of nine ME charities and support groups. We now have more than 17 charities and associate members. The whole scenario has changed considerably since those early days. Despair has gradually turned to hope. There is more public understanding of ME and, with a few notable exceptions, the professions are exhibiting more appreciation of the complexities of the disease. The rewriting of the NICE Guideline for ME/CFS is eagerly anticipated despite the repeated deferrals of the publication date. Thanks to the work of the UK CFS/ME Research Collaborative, the grant of more than £3 million for a large genomic study of people with ME is under way.
From a personal point of view, I have been rewarded by the determination of all Forward-ME members to set aside their differences and to work together to achieve the objectives we agreed upon at our first meeting. We still have some way to go, but the foundations have been laid for our continued cooperation. I realise that what is needed for our future is a different approach to our relationships with people outside our small community. Instead of the ad hoc basis I have worked under, an efficient system of management would significantly enhance our impact. Good fortune has sent us just the right person in Andrew Morris who has all the skills and experience we need. Additionally, he has a daughter with ME and the determination to improve the world for people with ME. As you will see from the minutes of our meeting on 16 March 2021, he has given the matter much thought and has now said that he is willing to take over from me as Chairman. I will still be around for a while, as it is intended that the changeover should be smooth and it may take a while for Andrew to find his way around. We will work in tandem until I am no longer needed. He is at the front!
It only remains for me to thank everyone with whom I have been involved over 25 years of working with people with ME, particularly members of Forward-ME, for inspiring me, to wish you well and to remind you all that Unity is Strength!
8 April 2021
ANDREW B MORRIS – BIOGRAPHY
Andrew Morris was a leading figure in the events industry for over thirty years, with unique experience in managing stakeholder relationships in family, private equity, local government and franchise business ownership.
He launched the innovative Business Design Centre in Islington in 1986, and in 1999 led the management buy-in of Earls Court & Olympia, acquired from P&O, managing the divestment to St James Capital/Nomura in 2004. He was then appointed CEO of the National Exhibition Centre (NEC) in Birmingham where he transformed the culture from ‘council’ to ‘commercial’, kick starting the long-term masterplan for the site as a leisure destination.
His interest in coaching and leadership led to the acquisition of the Academy for Chief Executives where he became CEO for the next 5 years, subsequently selling to his largest competitor, Vistage, based in San Diego, USA. His book ‘Business to Go’ capturing his approach to how SME’s grow, was published by Troubador in April 2012.
Today, Andrew has a portfolio of interests, helping entrepreneurs develop themselves and their business through mentoring and strategic advice, as well as leadership workshops and facilitation. In 2018 he launched his charity, The Wellside Trust, supporting vulnerable and disadvantaged victims of trauma, loss and racism.
Andrew lives in Hampstead in London with a home in Devon, and his mantra is ‘take your job seriously, but not yourself.’
He has been married since 1976 to a ceramicist, Jennifer, and has three children, Amy, Sophie and Ben, who don’t take him seriously.
NEW STATEMENT ON LONG COVID AND ME - DECEMBER 2020
Statement on long COVID and ME/CFS by the International Alliance for Myalgic Encephalomyelitis December 2020
IAFME is a formal collaboration between national organizations representing patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). SARS-CoV-2 (COVID-19) continues to affect millions of people globally. While some people recover, other people have a delayed recovery and across the world we are now seeing the emergence of a significant group of people who are struggling with a wide spectrum of symptoms similar to ME/ CFS, many weeks or months after their initial COVID infection.
From our experience we know that, like ME/CFS, long COVID is both a real and highly disabling condition. There are, of course, many differences in our experience of long COVID and its relationship to ME/CFS but we have come together as an alliance to share the similarities in our experience in the hope of better outcomes for patients, and their families, experiencing both long COVID and ME/CFS.
Stop, Rest, Pace
We counsel individual patients, medical providers and people operating at all political levels associated with health to advise patients to stop, rest and pace. Patient organisations working in ME/CFS will often have tools or services to assist with this. We encourage medical professionals and long COVID patients to contact ME/CFS organisations in their own country to share appropriate resources and assistance available.
Better outcomes by far are found from advising patients not to push and, as with ME/CFS, not to focus on exercise. Patient health and quality of life is maximised by advocating for and advising that they rest, manage their activities and that their symptoms are treated – as possible and appropriate.
Opportunity for Research
The sudden, dramatic rise of COVID-19 provides a real opportunity for much-needed research into post viral conditions – research which will help both people with long COVID and people with diseases such as ME/CFS. We urge Governments and philanthropists to seize this opportunity to understand what is delaying (or preventing) recovery and – crucially – what restores health to those patients who recover.
We will continue to work collaboratively to ensure that this opportunity is not lost. The neglect of people with ME/CFS must stop. We hope that some good may come from the pain and suffering caused by this pandemic in that it may finally help us to see the investment in research, treatments and care that every single adult and child with ME/CFS and their families deserves.
International Alliance for ME Statement, signed by XXX as a member.
- Our alliance seeks to facilitate a coordinated, simultaneous dialogue with policymakers at national and international levels, increasing its potential impact.
- We encourage the pooling, sharing, and dissemination of advocacy and communication of resources. forward-ME Promoting effective joint working by ME and CFS organisations to maximise impact on behalf of all people with ME and CFS in the UK www.forward-me.org.uk 2
- We promote the expansion of engagement with relevant stakeholders – worldwide organizations sharing the same message is much more powerful than an isolated voice.
Refer also to US ME/CFS Clinician Coalition Letter: Post-COVID “Long Haulers” and ME/CFS October 30, 2020 found at: https://tinyurl.com/y28w3t95
website (www.decodeme.org.uk) :
- DecodeME is very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it. The study should help us understand the disease and ultimately find treatments. You can read more about how genome-wide association studies (GWAS) have had impact in other disease areas here: https://www.decodeme.org.uk/the-science/
- Details of members of the Decode Partnership/Project Team can be found here: https://www.decodeme.org.uk/about-us/
- Dates: Soft launch in summer 2021 to test processes with an invited group of individuals only; full recruitment launch end September 2021 with study completion August 2024, interim findings at appropriate points.
- FAQ: https://www.decodeme.org.uk/faqs/.