Reproduced with permission of
InterAction magazine, Issue 64, May 2008
Page 6: RSM conference
On 28 April Sir Peter Spencer addressed a Royal Society of Medicine (RSM) Conference on CFS in London. The charity was criticised by some for agreeing to share the platform with psychiatrists and a demonstration was arranged outside the event. Action for M.E. saw the conference as an opportunity to present the patient perspective through the evidence of our surveys and to make the case for more research.
Here is an extract from Peter’s presentation, which was made to an audience that included GPs and consultants in areas such as rheumatology, pain management and rehabilitation:
“In M.E. Awareness Week, Action for M.E. will again launch a campaign, based on the results of a national survey, highlighting some serious shortcomings in the provision of health care and social support to people with M.E.
“The survey was undertaken in conjunction with the Association of Young People with M.E. The number of responses has been our highest ever. Added to the information we have collected on previous occasions, it gives us some powerful insights into the patient perspective today on health services being provided to people with M.E. in the UK.
“First, some anecdotal evidence. I received an astonishing letter from one of our members recently. This person had been diagnosed with M.E. over 10 years ago. She had encountered a typical range of reactions from her family and friends, from sympathy to outright rejection. Her experience with health professionals had been equally varied.
“However, her purpose in writing was not really to tell me about her M.E. but about her multiple sclerosis (which had just been diagnosed) – and to tell me what a great relief it was to have MS and not M.E. after all!
“Why? Because everyone, including and especially doctors and nurses, were so much more sympathetic, responsive and basically just kinder!”
Peter then showed a selection of slides, outlining some of the results given on pages 2-3. The figures concerning graded exercise therapy were hinted at but not revealed in anticipation of publication on M.E. Awareness Day. Instead Peter reminded delegates of the results from our 2001 survey.
“We shall be pressing hard for better safeguards to be introduced whenever this treatment is undertaken,” he said, “including an explicit requirement for the risks involved to be clearly explained in advance to the patient, who must have a comprehensive understanding of what is involved before giving his or her consent.”
Later in his presentation he added: “I have some serious reservations about the way in which the principles of evidence based medicine have been applied in the production of some recently published guidelines. The approach is inconsistent with the National Service Framework for Long Term Conditions, which states: ‘Randomised controlled trials and other quantitative methodologies are not necessarily best suited to research questions involving long term outcomes, varied populations with complex needs and assessment of impact on quality of life rather than a cure’.”
As doctors are key players in the assessment of welfare benefits claimants, the issue of Disability Living Allowance (DLA) and the threat of recent changes in benefits was also addressed.
Disability Living Allowance
“A staggering example from our data is that 374 people had to go to an appeal or to a tribunal to obtain DLA and of these, 274 (ie. 72%) were successful,” said Peter, “strongly suggesting that the application should have been accepted in the first place.”
Peter stressed his concerns about the way in which the key decisions on resourcing specialist NHS services has been delegated down to financially hard-pressed decision-makers at local level.
“This emphasises the need for GPs to be properly trained to recognise the true nature of M.E. – and to be more confident in diagnosing and treating the illness, knowing when to refer patients on to specialists (where they exist).
“Six years have passed since the CMO report was published and the rate of improvement in early diagnosis, a crucial indicator, has been extremely disappointing.”
Hope for research
“It is not easy to understand why the Medical Research Council has on the one hand issued a highlight notice, encouraging research proposals into M.E. whilst at the same time continuing not to fund research which is desperately needed to understand the aetiology and pathogenesis of the illness.
“However,” Peter continued, “there is some hope on the research front. Professor Stephen Holgate of Southampton University, a key player in the MRC, has a plan that will establish an agreed national agenda for research in the UK and ideas to attract high calibre brains into this challenging field.
“Meanwhile, it is our intention to play an active part in helping to develop strong proposals for mainstream research funding. Soon we will be announcing funds of up to £25k each for some of the pilot research programmes chosen from the 21 submissions put forward last year after the November 2006 Research Summit.”
Critical partner to the NHS
“Unlike most other M.E. charities both Action for M.E. and AYME have elected to be critical partners with the NHS, to work together for the greater benefit of all people with M.E. The word ‘critical’ here is as important as the word ‘partner’,” stressed Peter.
“Looking to the future we have a great opportunity to work together on a common agenda. This will include finding ways of achieving: more funding for the specialist services – especially for children and the severely affected; more training for health professionals especially GPs; more biomedical research into the physical aspects of M.E.; and greater assurance that those in need of welfare support will be treated fairly.
“It is time to change the image of this illness, to ensure that all patients are treated with understanding, respect and a bit more kindness than they receive today.”