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 coping technique which many people with M.E. rely on to balance their activity and rest requirements – has been omitted in favour of lashings of information about the value of Cognitive Behaviour Therapy (CBT).
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.
Here's how the Chartered Society of Physiotherapists approached the story on August 13.
Will you be making an analysis and position statement on this guide?
The detailed discussion about symptoms and possible pharmacological recommendations and cautions indicates an awareness of the most recent developments in research on the range of physiological problems involved in this multi-system disorder. In view of this, and of the recent IOM report stating that this is a Systemic Exertion Intolerance Disease, in which ‘exertion, of any type, physical, cognitive or emotional, may adversely affect many organ systems in the body’, it seems inexcusable that this document goes on to recommend CBT and GET, which have the aim of increasing activity. The aim of treatment should be to improve the patients’ state of health, and therefore treatment/management of a disease in which ‘activity’ does systemic damage, it must involve minimising activity, not increasing it.
What treatment? I have had ME for twenty years and have never being given treatment by specialist just advice to pace and rest. There only seems to be treatment for psychological illness and ME is definitely not that.
The treatment ME patients get is Appalling I was Diagnosed with ME by a Specialist
At my local Hospital about Twenty odd years ago.
After all this time I am now on so many tablets for Depression/Pain/Panic Attacks/Stress/
Sleeping Tablets/Agraphobia/bowel Problems and then after being in the Support Group
For two years Maximus want me to have a Assessment.
Apparently they asked my doctor for a reply but he didn’t send it back in time.
Apparently researchers are working on cures for this Horrible Disease,when
Most Doctors still quitely believe it’s the yuppie flu,and there’s nothing really wrong
With us.
However we live in hope of a Cure and it can’t come Quick enough for me,as I’m
Now Sixty Years old and would like to go back to the time I felt Normal however Brief.
Special Thanks To My Wife And Children for their continued Support.
Keep Smiling
Gordon.
I too would appreciate Dr Shepherd’s views on this report and which charities had input to this please.
It’s better than just CBT and GET, but I worry that Pacing is excluded. I also worry about the benefits system talking about ‘compliance’ or benefit cuts!! This will impact on many young people who are unable to do CBT and especially GET.
At least Pain is included, but Pain Management is limited to the available drugs and Mindfulness at the moment.
Hello Hope
Thank you for writing in. We can’t answer your questions at the moment because it is holiday time for some of us. But please give us time. We will!
Best wishes
Tony
PS Will this be incorporated into NICE Guidelines please? If so, will it take ME/CFS out of Static Status and put it into another category, which should be Neurological please?
Sorry Tony. It must be an even busier time for you trying to hold the fort, especially with all the latest news. Retirement means every day is the same and ill health means holidays don’t happen any more, for me at least, but I keep busy with friends.
The more I read the Bacme guide the more I wonder where it’s leading.
At the moment, I’d like to think it’s the transitional period (years) between psychiatric and physical/biological evidence. Perhaps we are making progress – slowly!
Ann
Hi Ann
>> “…the transitional period (years) between psychiatric and physical/biological evidence.”
I like that! Let’s hope we’re both not being just a tad optimistic for our own good.
All best
Tony
The fact that pacing has been omitted in the new BACME guide is truly alarming since pacing is actually how pwME cope/survive. The fact that there is no guidance for the severely affected is unsurprising. The fact that they say that ‘CFS/ME’ is not a mental health problem is indeed a concession and a sign that they are perhaps catching up – but they can’t be seen to be ditching all their beliefs at once, can they?
Hi Nasim. I think your’e absolutely right. Psychiatrists are giving a little, but can’t say outright – we were wrong!!
With all the biomedical evidence mounting they have found a way to give in – all be it slowly.
Your comments are always appreciated
Thank you
Ann