In the Scottish Parliament on 6 October 2011, SNP member for Kirkcaldy David Torrance asked the Government what action it was taking raise public awareness of M.E. or chronic fatigue syndrome.
The Minister for Public Health, Michael Mathieson, replied:
In September 2010, we published the “Scottish Good Practice Statement on ME-CFS” for use by general practitioners as part of the process of ensuring that people get better and more consistent standards of care, including quicker and more reliable diagnosis.
The good practice statement is accompanied by a patient guide that sets out what someone should know if they or their doctor think that they might have ME. The statement has been issued to GP practices and consultants across Scotland to help raise both public and professional awareness of the condition.
In addition, Action for M.E has been awarded some £42,000 from the self management fund to set up an online information and support hub for people living with ME, their carers and their families.
David Torrance:
Constituents of mine suffering from ME often tell me that their condition can make the complex, drawn-out process of trying to access support from public services too daunting to complete. The United Kingdom Government’s Department for Work and Pensions is among the most frequently cited obstacles in that respect, but it is not the only one. Are there any measures under consideration to improve support for ME sufferers in that respect?
Mr Mathieson:
As I said in my previous answer, we as a Government are committed to ensuring that there is an improvement in the standard of care and services that people who suffer from ME receive. The member will appreciate that the DWP is a reserved area, although some of us feel that it would be better if it were responsible to this Parliament. However, I expect public agencies to be sympathetic to individuals who have conditions that might compromise their ability to make claims for benefits, for example. I hope that, in recognition of that, the DWP will take action in order to ensure that Mr Torrance’s constituents are given the assistance that they require in order to make their relevant benefit claims.
Mary Scanlon, Con Highland and Islands and a former vice-convenor of the Cross Party Group on M.E.:
One of the fundamental problems relating to ME-CFS is that research funding still tends to be made available to those who believe that it is a psychological disorder, whereas the World Health Organization and other similarly highly respected organisations now recognise that it is a biological condition. What will the minister do to ensure that research is carried out into the biological rather than psychological causes?
Mr Mathieson:
The member might not be aware of this, but the chief scientist office in the Scottish Government has already provided some £400,000 for the promoting action on clinical excellence—PACE—project that looks at cognitive behavioural therapy alongside exercise therapy as a mechanism for treating people with ME.
The Medical Research Council has also indicated that it will provide some £1.5 million towards further research on ME and it expects bids from research practitioners in relation to how they can provide more treatment for people who suffer from ME.
Research is being undertaken and the PACE programme is already showing some very encouraging signs of the benefit that that approach can have. I have no doubt that as the programme goes forward we will be able to look at its results to see what further lessons can be learned about the treatment of ME sufferers in Scotland.
Jim Eadie, SNP, Edinburgh Southern and vice-convenor of the Cross Party Group on M.E.:
In improving services for people with ME or chronic fatigue syndrome, will the minister encourage the NHS to implement the healthcare needs assessment that was carried out by the Scottish public health network so that health boards can further develop appropriate services for people with ME or chronic fatigue syndrome and thereby provide rapid and accurate diagnosis and assessment, supportive care and treatment, and access to wider support when that is appropriate, for people who have that debilitating condition?
Mr Minister Mathieson:
We are generally supportive of the assessment of needs that was published last year. We recognise that it contains a number of recommendations that must be taken forward by individual health boards to ensure that they have the right service model at local level to meet the needs of those members of their population who suffer from ME.
It is important to recognise that progress is starting to be made in that area. I understand that Lothian NHS Board has reviewed the clinical pathway for people who are diagnosed with ME to ensure that they are referred back to their general practitioner at an early stage so that they receive the clinical and wider support that they require. I expect boards across the country to use the good practice statement that was issued to look at how they provide services for sufferers of ME with a view to improving the level of service at local level.
A few months ago, in a response to me sent via my MP, Michael Matheson assured me that the ‘Scottish Government recognises ME-CFS as a serious neurological illness, and that we are committed to providing the best care possible for people living with the condition.’
Disappointingly – and predictably – he then invoked the PACE trial as an encouraging example of research into ME.
He is clueless.
And here he is trotting out the same old rhetoric again.
I emailed him via Scottish Parliament but never got a response.
In answer to criticisms of the PACE trial, Prof. Peter White acknowledged that the PACE trial was a study involving patients suffering Chronic Fatigue Syndrome and, by definition, excluded those with M.E.
The Scottish Minister ought to know this fact, but probably conveniently chooses to ignore it.
Perhaps the M.E.A. should point that out to him.
Very well said nmj and Dionysus.
The PACE trial, although not including people with ME, was, until the study was published, always claimed to be including people who met an ME diagnosis. Although it showed CBT and GET do not work for those with fatigue, and although the measures used were unscientific except for the 6 min walking test, it is unacceptable they have been allowed to spend more than 5 million of tax payers money that was meant to have been spent on ME. It is also unacceptable that this collection of words be allowed to inform the care of any patients with ME. Obviously this once again shows the NICE guidelines to be a fictitious creation, with only the ability to deny urgent care and biomedical research to terribly sick patients with ME. Why has the MRC even now not taken these people to task for spending that money on anything but ME? And for failing to design a study that would that could be called scientific?
Only someone who has failed to read the paper and comprehend what is science would suggest the PACE trial had been worth while.
I have just emailed Michael again – giving him the benefit of the doubt that he did not receive my email in June.
This constant blind reiteration of the wonders of PACE – of which most MPs are guilty – is just plain wrong.