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
www.bacme.info/document_uploads/BACME_docs/BACMEguidewithpharmacology2015.pdf
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
http://forums.phoenixrising.me/index.php?threads/bacmes-new-clinical-guide-to-practical-management-of-m-e-for-healthcare-professionals.39104/
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
www.meassociation.org.uk/2015/08/specialist-nhs-professionals-launch-new-therapy-and-management-guide-for-cfsme-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
www.csp.org.uk/news/2015/08/12/physios-share-expertise-guide-therapy-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