Blog Archives

Hereford Group highlighted on the MEA (ME Association)

21/8/2015

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
www.meassociation.org.uk/2015/08/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

15/8/2015

August 2015

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

“No county facilities for these illnesses”

8/8/2015

From Hereford Times, 08 August 2015

Hereford Group highlighted on AfME -

www.actionforme.org.uk/get-informed/news/daily-press-summary/1m-philosophy-study-into-cfs

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
06/08/15

Full letter from the Hereford Times

www.herefordtimes.com/news/letters/13581235.No_county_facilities_for_these_illnesses/

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

Hereford Group highlighted on the MEA (ME Association)

New clinical guide for CFS/ME healthcare professionals

“No county facilities for these illnesses”

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