- 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.
15,180 people signed the ME Association (MEA) national petition, addressed to Sir Andrew Dillon, Chief Executive, NICE, calling for a complete review of the NICE guideline for ME/CFS. This included many Worcestershire people who signed, many of whom gave their comments.
The 2007 NICE Clinical Guideline has been checked by NICE for the need for an update and the NICE CFS/ME Guideline Registered Stakeholders were invited to comment on NICE’s surveillance consultation - they were given 14 days, from 10 - 24 July to voice their concerns.
LocalME (an online forum for local ME group contacts across the UK) responded - they had managed to receive an extension until 31 July. The MEA announced Stakeholder submissions from Action for ME (AfME), Forward-ME, Invest in ME Research, LocalME, the MEA, Tymes Trust, and many more.
National Petition -
ME Association petition represents biggest expression of no confidence in a NICE guideline ever recorded | 26 July 2017
NICE surveillance consultation -
Stakeholder submissions -
see attached file below
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.
Whole independent re-analysis of the PACE Trial recovery paper -
Now available outside of paywall.
“Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial”
Conclusion - “The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.”
Explanatory PACE Trial recovery paper articles
(Pacing, Activity, and Cognitive behavioural therapy, a randomised Evaluation) -
‘How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma’
‘Yet more research shows chronic fatigue syndrome is real. When will health services catch up?’
‘Getting it wrong on Chronic Fatigue Syndrome’
‘Call for retraction of PACE publication’
PIP Medical Assessments with CAPITA - Dr Charles Shepherd (ME Association) to be at House of Lords meeting - Oct 2016
Request for comments or questions – positive or negative about a DWP medical assessment that has been carried out by a CAPITA health professional - before 9pm October 24 2016.
From ME Association news.
PIP Medical Assessments with CAPITA | meeting at House of Lords next Tuesday | 21 October 2016
I will be at a House of Lords meeting with the Countess of Mar on next Tuesday (October 25) where there will be a representative from CAPITA attending to give a presentation and answer questions about the medical assessments they carry out for Personal Independence Payments (PIP) on behalf of the Department for Work and Pensions (DWP).
If you have any comments or questions – positive or negative – that are relevant to a DWP medical assessment that has been carried out by a CAPITA health professional that could be made use of in this meeting please post them here, or to me via: email@example.com
I will need them by 9pm next Monday (October 24) 9pm at the latest.
Information on PIP outcomes from the
September MEA website survey on PIP:
Have you applied for a Personal Independence Payment (PIP) from the DWP? If so, what was the initial decision on your claim?
Refused at initial application (24%, 53 Votes)
Refused on appeal (5%, 10 Votes)
Awarded care and mobility at either rate (26%, 57 Votes)
Care only at enhanced rate (0%, 1 Votes)
Care only at standard rate (7%, 16 Votes)
Mobility only at enhanced rate (1%, 2 Votes)
Mobility only at standard rate (5%, 12 Votes)
Application in progress (8%, 18 Votes)
I’m not applying for PIP (24%, 53 Votes)
Total Voters: 222
Dr Charles Shepherd
Hon Medical Adviser
The ME Association
Should people with ME/CFS have a flu jab this year?
Dr Charles Shepherd weighs up the evidence 6 October 2016.
The ME Association has a leaflet that covers flu vaccination and ME/CFS in detail.
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
Why the same figure year after year?
ME Essential Autumn 2016 (ME Association [MEA] magazine)
Letter from Warwick B Davis, Worcestershire ME Support Group,
I have suffered from ME for over 20 years and from the first months I have constantly heard or read that there are around 250,000 sufferers in the UK. Why still this figure?
Are there no new sufferers? Do people not pass away?
Recently the press reported that one in 50 16-year-olds had some level of ME. This is incredible. As an ex-teacher, I always felt that there was something else other than laziness in some pupils not performing.
If 250,000 continually gets quoted, the public do not understand how debilitating ME can be and the serious impact this illness has on our lives. As it is not a notifiable illness, it is difficult to know exact numbers.
Neither the public nor the NHS will ever take us seriously if the figures remain the same year after year.
And how did it come about in the first place?
21 August 2015
Hereford Group highlighted on the MEA (ME Association)
J Simpson responds to Tony and Pat Adams, Co-chairs, Herefordshire CFS/ME/FMS Group
‘It is time for us to take M.E. seriously’ |
Letter to the Hereford Times | 21 August 2015
From the Hereford Times, 21 August 2015/
WELL done, Tony and Pat Adams for highlighting the plight of sufferers of ME and fibromyalgia in Herefordshire (No county facility for these illnesses, Letters, August 6).
A study in Denmark confirmed these opinions:
“In comparison with other chronic illnesses such as multiple sclerosis, end-stage renal disease and heart disease, patients with ME show markedly higher levels of disability” (Quality of Life and Symptom Severity for Individuals…from a Randomised Clinical Trial, RR Taylor, American Journal of Occupational Therapy 2004:58:35-43).
And Professor Nancy Klimas, of the University of Miami, has said:
“There is evidence that the patients with this illness [ME] experience a level of disability that is equal to that of patients with late-stage AIDS, patients undergoing chemotherapy (and) patients with multiple sclerosis,”
What does Herefordshire Clinical Commissioning Group do for us? The answer is nothing.
MS? Come to the clinic.
AIDS? Come to the clinic.
Renal disease? Come to the clinic.
ME? (Worse quality of life than all those.) Close the door on the way out.
J SIMPSON, Bartestree
HERE’S THE ORIGINAL LETTER BY TONY AND PAT ADAMS: www.herefordtimes.com/news/letters/13581235.No_county_facilities_for_these_illnesses/
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