- ME Association: Breaking News: NICE decides to Fully Update its guideline on ME/CFS!
- Action for M.E.: NICE guidelines on CFS/M.E. to be reviewed
- ME Research UK: NICE CFS/ME guideline to be updated
- NICE announcement
- NICE Guideline: Clinical guideline [CG53]
- The Times: Mutiny by ME sufferers forces a climbdown on exercise treatment | 25 September 2017
The National Institute for Health and Care Excellence (NICE) announced on 20th September 2017 that it is planning a full update of its guideline on the diagnosis and management of CFS/ME.
This is your opportunity to voice your concerns.
The ME Association has today [10 July] launched a national petition that aims to demonstrate to NICE (National Institute for Health and Care Excellence) that people with CFS/ME are not happy with the current guideline or the way in which the current review is being conducted.
Action for ME are also directing people to the MEA national petition.
Please sign the petition, add your comments if you are able to, and share/forward this blog.
Action for ME’s ‘Christmas 2016’ InterAction magazine throws a spotlight on our group.
Discussion on the Action for ME facebook page -
The facebook announcement gives a link to their 'Support near you' page.
ME Association -
SOS from the Worcestershire M.E. Support Group - help us or we go under! | 3 September 2016
Phoenix Rising -
Worcestershire ME Support Group - possible closure (UK)
Tom Kindlon @TomKindlon - tweet: twitter.com/TomKindlon/status/771693694093238272
- Retweeted by Action for M.E twitter.com/actionforme
9 October 2015
Dr Alastair Miller stands down
Prof Julia Newton and Dr Gregor Purdie have been appointed to the shared role of AfME’s Medical Adviser
Action for ME website - Action for M.E. appoints new joint medical adviser
9 October 2015
Action for M.E. is delighted to announce that Prof Julia Newton and Dr Gregor Purdie have been appointed to the shared role of our Medical Adviser.
Prof Newton and Dr Purdie have taken over from Dr Alastair Miller, who has been Action for M.E.’s Medical Adviser since 2010.
Prof Newton, Clinical Professor of Ageing and Medicine and Dean of Clinical Medicine at Newcastle University, has published a considerable body of research relating to M.E. and other chronic diseases associated with fatigue.
Dr Purdie, who has been working with people affected by M.E. since he was a junior doctor in 1979, was Clinical Lead for M.E. for NHS Dumfries and Galloway until he retired last year, and is already a Trustee of Action for M.E.
Both have been working closely with Action for M.E. for a number of years, contributing to the charity’s ongoing programme of UK-wide events and resources for patients and professionals.
Prof Newton’s 2013-2015 study into muscle dysfunction and M.E. was funded by Action for M.E., while Dr Purdie worked with the charity on a series of educational webinars for GPs who, according to UK-wide research (2013, Aviva Health of the Nation Index) find M.E. one of the most challenging conditions to diagnose and refer.
Sonya Chowdhury, CEO, Action for M.E., says, “Bringing together considerable research experience and significant clinical expertise, Prof Newton and Dr Purdie are something of a dream team for us. I know their extensive knowledge, shared with Action for M.E. staff and Trustees, and in turn with those whom we support, will help improve the lives of those affected by this terrible condition.”
Alan Cook, Chair of Board of Trustees at Action for M.E., said: “We are enormously grateful to Dr Miller for the time, expertise and support he has freely gave to Action for M.E."
Dr Miller was the lead Clinician for the Herefordshire & Worcestershire CFS/ME Service, until he moved to Liverpool in 2005. His position was - Consultant Physician in Infectious Disease and General Internal Medicine–Worcestershire Acute Hospitals NHS Trust.
New clinical guide for CFS/ME healthcare professionals
British Association for CFS/ME (BACME): Therapy and Symptom Management in CFS/ME
British Association for CFS/ME (BACME) announcement
Phoenix Rising discussion, - includes Professor Jonathan Edwards’ comments about the guideline (including Rituximab), plus BACME history/background.
ME Association (MEA) article
Action for ME (AfME) blog
Chartered Society of Physiotherapy’s announcement
British Association for CFS/ME (BACME): Therapy and Symptom Management in CFS/ME
New - BACME Therapy and Symptom Management Guide CFS/ME services in the NHS are staffed by a range of health professionals, including occupational therapists, physiotherapists, counsellors, psychologists, dieticians, and doctors.
BACME has developed a practical checklist/toolkit and guide for the treatment of CFS/ME that can be used by all of these professionals. We did not want to produce another long guidance document, because these exist already! Instead, we wanted a practical clinical treatment summary, incorporating existing tools and methodologies. Our aims were to bring together specialists from different services/professions who work with adults and children who have CFS/ME, and to develop a consensus approach to broader treatment. This includes existing documents, e.g. CBT competencies, NICE guidance, and PACE trial findings, together with new content, e.g. medications for symptom management. The approach has been based on clinician expertise, patient experience and the best available evidence, and is free to download:
BACME Guide: Therapy and Symptom Management in CFS/ME
BACME's new clinical guide to practical management of M.E. for healthcare professionals
Worth reading all pages of this discussion, - includes Professor Jonathan Edwards’ comments about the guideline (including Rituximab), plus BACME history/background.
M.E. Association’s article
Specialist NHS professionals launch new therapy and management guide for CFS/ME | 4 August 2015
A new guide to CFS/ME therapy and symptom management has been published this week by the health professionals who run the specialist NHS services.
The 32-page document, which discusses in some detail the drugs used to manage symptoms of the illness, is in stark contrast to the very much longer guideline published by the National Institute for Health and Clinical Excellence in 2007 – in which drugs hardly got a look in.
Pacing, the technique which aims to help people with M.E. balance their activity and rest requirements, seems to have been omitted.
The guide has been launched by the British Association for CFS/ME (Bacme), a voluntary organisation representing the clinicians and researchers involved in the specialist NHS services, following consultation with patients and some M.E. charities.
In a press release, Bacme chair Dr Alastair Miller, an infectious diseases consultant who leads the local service at Broadgreen Hospital in Liverpool. commented:
““The new guidelines meet a considerable need for a practical, clinical, treatment summary for all healthcare professionals working with patients suffering from this complex condition to follow. By bringing together specialists from different services and backgrounds, our guide provides a concise consensus for broader treatment; complementing existing documents such as NICE guidelines to develop something wider-reaching and more practical in everyday work.”
While this new guide focuses on the clinical needs of adults with the illness, Bacme say they may publish something in the future to help children and those severely affected.
Mary-Jane Willows, chief executive of the Association of Young People with ME who has worked closely with Bacme at their training days and conferences in Milton Keynes, commented: “All too often the experiences we hear from our young members and their families are those of being passed from one medical professional to another with very little understanding of what CFS/ME is and what it involves.
“Sadly, the result is often the condition worsening before the patient receives the treatment they so desperately need, in some cases ruling out recovery completely. But CFS/ME is a treatable condition, and we welcome these guidelines from BACME to provide much-needed practical guidance to all professionals responsible for the care of those in need.”
The guide, which can be downloaded HERE, will become a key constituent in Bacme’s package of training materials.
Dr Hazel O’Dowd, a clinical psychologist who heads up the Bristol service, writes about the new guide for the Action for ME website HERE.
Action for ME (AfME) blog - CEO blog: Dr Hazel O’Dowd on BACME
www.actionforme.org.uk/get-informed/news/our-news/ceo-blog-dr-hazel-odowd-on-bacme 4 August 2015
The British Association for CFS/M.E. (BAMCE) launches its new clinical guide to practical management of M.E. for healthcare professionals today. Our CEO Sonya Chowdhury invites Bristol NHS M.E. Service clinical lead Dr Hazel O’Dowd, who was involved in its production, to explain how the guide came about.
When someone with M.E. is referred to me at the Bristol clinic, there’s an analogy I like to use to describe how M.E. is affecting them.
I explain that M.E. is like a thief that has broken into their body. You might be able to fix the point of entry – like getting rid of a virus, say – but alarms are still going off all over the place: in the nervous system, in the endocrine system, in the immune system, and so on.
While we might not be able to turn the alarms off entirely, our aim is to make them as quiet as possible. In order to do this, my team and I work with each patient as an individual. Everyone’s alarm systems are different, and everyone with M.E. should be supported to work out, with a well-informed healthcare professional, the best way to move forward.
This, in essence, is the reason that BACME developed its new clinical guide. We brought together professionals from different specialisms to produce it, and asked patient groups to help us review and revise it.
Available to everyone through the BACME website, the guide asks clinicians to consider a range of strategies that might be beneficial. What stage should they be used at? How can they work with their patient to find the right tools and approaches for them?
We did not want to produce another long guidance document – there are enough of those already. Instead, this is a practical, clinical, treatment toolkit, incorporating existing approaches and methods that can be tailored to each patient, their individual experience and their realistic goals.
One thing the guide really stresses is that it’s really important that clinicians allow people with M.E. to set the pace. We know that different people with M.E. have different needs, and applying the wrong approach at the wrong time, or moving too quickly, can be very unhelpful.
For instance, we know that those with severe M.E. need different support. So BACME is working on separate guidance for treating who are severely affected by the condition, and another for working with children who have M.E.
The guide is being launched today, and I’m really keen to see how it will help clinicians equip themselves with the tools they need to work collaboratively with people with M.E.
Chartered Society of Physiotherapy’s announcement
Physios share expertise in guide to therapy for ME
Physiotherapy for people with chronic fatigue syndrome must be built around the relationship with the individual, says the British Association for Chronic Fatigue Syndrome/ME (BACME).
The association’s Therapy and symptom management guide was published on 4 August. Even when a diagnosis of CFS/ME is well established, new symptoms need careful evaluation to ensure that no additional pathology has developed, it says.
BACME is a voluntary organisation that is open to all UK-based health professionals and researchers involved in diagnosing and treating CFS/ME. It says the guide includes a checklist and guide for the treatment of CFS/ME in the NHS by a range of health professionals, including physios.
Developing a consensus about treatment
The aim of the document, according to BACME, is to bring together specialists from different services and professions who work with adults and children who have CFS/ME and to develop a consensus approach to treatment.
It says that the approach has been based on clinician expertise, patient experience and the best available evidence.
The guide has two major sections. The first, symptom management, is intended to provide information about the symptoms of CFS/ME and pharmacological therapy. The second offers guidance for therapists, such as a list of resources about therapies, as well as guidance on support and supervision.
A framework for therapy
Peter Gladwell is a clinical specialist physio at North Bristol NHS Trust’s CFS/ME service. He described the guide as a ‘state-of-the-art’ framework for therapy that can be used to develop an individualised care plan.
He told Frontline that physios worked alongside other professionals to produce the document.
‘It’s particularly helpful that the guide is accessible to both physiotherapists and patients,’ he said. ‘I think this can help to foster shared decision-making about rehabilitation.’
Website links BACME guide: Therapy and symptom management in CFS/ME
From Hereford Times, 08 August 2015
Hereford Group highlighted on AfME -
Steps to getting M.E./CFS and FM recognised
In a letter to the editor, the co-chairs of a Herefordshire support group for people with M.E./CFS and fibromyalgia highlight the illnesses, aiming to bring them to the attention of the local people. They mention a parliamentary debate on fibromyalgia in July, which was “an important step forward towards getting the condition recognised,” with key points raised at the debate applying to M.E./CFS as well.
Hereford Times, p 32
Full letter from the Hereford Times
No county facilities for these illnesses WE are writing, on behalf of members of the Herefordshire CFS/ME/FMS Group, to highlight Chronic Fatigue Syndrome (CFS), Myalgic Encephalomy- elitis (ME), Fibromyalgia Syndrome (FMS)) and to bring them to the notice of Herefordshire people.
Anyone can develop these conditions at any age. They are life-changing, debilitating, and symptoms for all three conditions can include profound exhaustion/fatigue, widespread severe pain, flu-like symptoms, stomach and digestive problems, memory and concentration loss, disturbed/unrefreshing sleep, intolerances/increased sensitivity and more. Non-sufferers find it difficult to appreciate how ill a person is, because we look normal.
There are no facilities/clinics to help people with these illnesses in Herefordshire, and diagnosis is difficult and can take up to three years.
On July 1, there was a parliamentary debate on fibromyalgia, which is an important step forward towards getting the condition recognised throughout the country.
Key points were raised, which not only apply to FMS, but to ME/CFS as well.
• Education and knowledge of FMS/ME/CFS must be improved among GPs and other health professionals to help improve diagnosis of these conditions.
• Strategies should be promoted and developed within the NHS to provide an integrated and holistic service with patient empowerment as key.
• The NHS should aim to set up a network of clinics across the country, so that patients who have a flare-up have somewhere to go for treatment other than A&E or hospital.
Our group meets on the first Saturday of every month (except January), from 2.30pm at the Aspire Community Hub, Canal Road, Hereford, HR1 2EA. Anyone is welcome to attend or check our facebook page on, facebook.com/CFS.ME.FMS.Group for up-to-date information on meetings.
TONY ADAMS & PAT ADAMS Co-chairs, Herefordshire CFS/ME/FMS Group
M.E./CFS support in Hereford
The Herefordshire CFS/M.E./FMS Group is a self-supporting, voluntary organisation which meets at 2.30pm on the first Saturday of every month (except for January) in the Aspire Community Hub, Canal Road, Hereford. A typical meeting will be good humoured and may have a guest speaker on a topic of interest. The next meeting will be on 1 August.
Hereford Times, online
Full article in the Hereford Times -
THE HEREFORDSHIRE CFS/ME/FMS GROUP – The Herefordshire CFS/ME/ FMS Group is a self-supporting, voluntary organisation which supports those who suffer from chronic fatigue syndrome, myalgic encephalomyelitis, and fibromyalgia syndrome. The group meets regularly at 2.30pm (doors open at 2.15pm) on the first Saturday of every month (except for January) in the Aspire Community Hub (formerly the Canal Road Day Centre) in Canal Road in Hereford. These are debilitating illnesses and symptoms can include profound exhaustion, fatigue, stomach and digestive problems (including irritable bowel syndrome), flu like symptoms, memory and concentration loss, disturbed unrefreshing sleep, intolerances/ increased sensitivity, severe pain, widespread pain and stiffness and many others.
Anyone can develop these illnesses at any age. The causes are not yet fully known, but can develop after trauma, illness and accidents. It must be stressed that the Herefordshire CFS/ME/ FMS Group is a support group that really lives up to its name and includes people from all walks of life.
Members do their best to help fellow sufferers and really care about each other.
If anyone thinks they might show the symptoms of fibromyalgia, chronic fatigue syndrome or myalgic encephalomyelitis, their first action should be to visit their GP.
Treatment is available to ease some symptoms, although they are unlikely to disappear completely. To non-sufferers the presence of CFS, ME and FMS is often not readily identifiable, but group members are fully aware of the problems and can share their experiences.
A typical meeting will be good humoured and may have a guest speaker on a topic of interest but members will always be updated with any relevant news on new research, medications, forthcoming events and absolutely anything that might help to alleviate their symptoms. The next meeting will be on August 1. New members are always welcome.
Anyone with any queries is asked to call Jenni on 01432 271536.
Action for M.E. -
“Bold assertion” about exercise and M.E. www.actionforme.org.uk/get-informed/news/daily-press-summary/bold-assertion-about-exercise-and-me
“Bold assertion” about exercise and M.E.
In a letter to Therapy Today, Joan Crawford questions its February 2015 report on exercise and CFS. She says of the article: “Uncritically your report states that ‘Both CBT and GET have been shown to be beneficial to people with CFS.’ The evidence base does not support this bold assertion.” Crawford goes on to reference some clinical trials and their limitations.
Therapy Today, online
M.E. Association -
Activity and chronic fatigue syndrome | letter in Therapy Today | March 2015 From Therapy Today.net, March 2015. Letter by Joan Crawford.
In the February 2015 edition of Therapy Today (News, p6) there is a short report on exercise and CFS. Uncritically your report states, ‘Both [CBT aimed at increasing patients activity and GET (graded exercise therapy)] have been shown to be beneficial to people with CFS.’ The evidence base does not support this bold assertion.
In a recent Cochrane Review(1) of the eight clinical trials of GET (n=1518) 85 per cent of the patients (n=1287) were recruited into five of these trials based on one symptom – fatigue.(2) This is a common symptom of many health problems, including major depression, making generalisation of the findings problematic. The high percentage of patients included in these trials with elevated levels of distress perhaps indicating a depressive state,(1) which may be their primary condition, confounds the results. Exercise, through behavioural activation programmes, has a moderately positive impact on patients with depression.(3) It is unclear whether the modest improvement seen in some of these trials can be accounted for by an improvement in low mood caused by depression. Moreover, where there are data, there is a high usage of antidepressants in patients included in trials. Three further trials used the CDC(4) CFS criteria (n=231). While these criteria purport to be more selective, they do not necessarily include patients whose primary difficulties include post-exertion weakness and debility beyond broadly defined fatigue and other general symptoms, that could be attributed to CFS or major depression.
There is also an issue with lack of evidence of patients’ fidelity to exercise programmes using objective measures. Without using monitoring devices such as actimeters or pedometers to track daily activity levels, we have no accurate way of assessing whether an increase in activity occurred and whether this helps. Black and McCully’s study(5) demonstrates the difficulties CFS patients face when trying to increase activity and concluded that they were exercise intolerant, unable to sustain activity targets.
Many patient surveys from across the world report numerous instances of harm and worsening of symptoms from taking part in exercise programmes. For a summary of the difficulties and limitations of the reporting of harms, in and outside of clinical trials, and why these might be underestimated, please see Kindlon.(6)
MA, MSc, CSci, MBPS, MBABCP; Chair, Chester ME self help (MESH); humanistic counsellor, CBT therapist and trainee counselling psychologist
1. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database Systematic Review 2015. Exercise therapy for chronic fatigue syndrome.
2. Sharpe M, Archard L, Banatvala J et al. Chronic fatigue syndrome: guidelines for research. Journal of the Royal Society of Medicine 1991; 84(2):118–121.
3. Cooney GM, Dwan K, Greig CA et al. Exercise for depression. The Cochrane Library 2013. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004366.pub6/abstract
4. Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Annals of Internal Medicine 1994; 121(12): 953–959.
5. Black CD, McCully KK. Time course of exercise induced alterations in daily activity in chronic fatigue syndrome. Dynamic Medicine 2005; 28(4):10.
6. Kindlon T. Reporting of harms associated with graded exercise therapy and cognitive behavioural therapy in Myalgic Encephalomyelitis/chronic fatigue syndrome. Bulletin of the IACFS/ME 2011; 19(2): 59–111.