Medical Services at the Department for Work and Pensions have published a new version of their ME/CFS training document for health care professionals carrying out benefit assessments. The 50-page document was published on 28 May 2014 and can be downloaded HERE.
After a quick, initial read, ME Association medical adviser Dr Charles Shepherd comments:
Although this new guidance for health professionals who are assessing DWP benefit claims is now finalised and not going to be the subject of any immediate further review, The ME Association will be sending in detailed comments and suggestions regarding our concerns about numerous aspects of the final version. We will also be requesting a meeting with Dr Mark Allerton at the DWP to discuss them.
A quite extensive consultation process took place during the preparation of this guidance and The MEA had input into this process.
Some of our input was accepted. For example, from p21:
The ME Association issued a press statement on the results of the PACE trial on the 18th of February 2011, which stated that ‘the results are at serious variance to patient evidence on both cognitive therapy and exercise therapy’. This was based on results from a survey performed by the ME Association in 200818, during which a comprehensive questionnaire was sent to people with Chronic Fatigue Syndrome and their carers, which suggested that pacing was found to be more beneficial than Graded Exercise therapy.
And whilst we are pleased to see that the ‘Further Reading' section refers to the MEA purple booklet – ME/CFS/PVFS: An Exploration of the Key Clinical Issues – as a source of information, the edition that is referenced is the one that was published in 2001!!
Paper copies of the current (2013) edition were, in fact, sent to DWP HQ during the consultation process.
But other parts of our submission were not accepted
It should be noted that the final guidance was only signed off after it had been reviewed by a clinician nominated by the Royal College of Physicians.
When I have had time to study the guidance in more detail, I will provide further details of what we intend to do.
In the meantime feedback from the ME patient community is very welcome. Please email meconnect@meassociation.org.uk
Dr Charles Shepherd
Hon Medical Adviser, MEA
Member of DWP Fluctuating Conditions Group
Oh dear, didn’t get past page 15 but this document obviously could have been written in the 1980’s. It is heavily in favour of CBT and GE as this is clearly supported in the comment – ‘Evidence suggests that patients with CFS/ME use more avoidance strategies to cope with the debilitating effects of fatigue. However, avoidance strategies have been associated with more fatigue and more functional impairment, including greater psychosocial disturbance in CFS/ME’. I do think we are fighting a losing battle. There has been so much physical proof of ME as part of research throughout the world so it beggars belief how this is constantly ignored by our medical profession. As someone who has put myself through a year long course of physiotherapy and CBT (and continued with it even though the physio had concerns it was the wrong route to take) it is insulting.
The videos of Prof. Julia Newton and Dr.Shepherd at least give a severe sufferer some heart that this dreadful and massively misunderstood illness is being taken seriously plus the talk given by Prof. Mark Van Ness.
I won’t bother reading this document any further as it is hard enough to struggle with the attitude towards this illness and carry on in this life as it is. (Bear in mind I only read to page 15 so I may have jumped to the wrong conclusions and everything thereafter was a wonderful understanding of this illness!!).
Thank you Charles. It’s a never-ending battle isn’t it.
On a brief look, it looks like Profs. Wessely, White and co. have had it pretty much all their way. I quote:
“To date there has been no single cause found and CFS/ME is probably best regarded as a multifactorial heterogeneous illness with physical, psychological and social factors all playing a part.”
“Predisposing factors identified include personality factors of neuroticism and introversion.3 Inactivity in childhood has also been identified.4 ”
“Psychological and social factors appear to be involved in perpetuating the symptoms of the illness. Factors associated with increased fatigue and severity of the condition include: a strong belief in the physical cause of the illness, a focus on bodily sensations and a poor sense of control over the complaints8,9. Evidence suggests that patients with CFS/ME use more avoidance strategies to cope with the debilitating effects of fatigue. However avoidance strategies have been associated with more fatigue and more functional impairment, including greater psychosocial disturbance in CFS/ME10,11.”
“There are two classifications in use in the ICD 10. CFS/ME can be classified under neurological disorders as G93.3 (Benign myalgic encephalomyelitis), or under neurotic, stress-related and somatoform disorders as F48.0 (neurasthenia).”
“The DSM-IV did not include the diagnosis of CFS/ME. However Neuroasthenia was classified as Undifferentiated Somatoform Disorder if the symptoms persisted for longer than 6 months. In the updated DSM-V (released in 2013) there has been a change with a new category named ‘Somatic Symptoms and Related Disorders’ replacing Somatoform Disorders.”
I haven’t had time to go through the lot (though much of NICE is regurgitated, predictably), but it can’t be said to be looking good.
‘CFS/ME is not usually associated with sensory loss (affecting vision, hearing or
speech)…Therefore sensory… impairment is unlikely unless other conditions affecting these modalities are present’
Totally dispute this – as someone who suffers from severe sensory overload (light, noise, touch smell) which, along with the usual symptoms all of which significantly impairs my daily functioning, I feel this paragraph should be strongly disputed.