The Countess of Mar, House of Lords, 11 October 2011:
I can think of no other group that is systematically discriminated against by the medical profession and social services. No other illness than ME has such a big impact on the lives of so many people and yet is given such limited funding for specialist care services and scientific research.
I suggest that this disease should be the responsibility of the NHS Commissioning Board to ensure that services are provided. ME would otherwise simply get lost in the sea of other much higher profile conditions such as cancer, diabetes and heart problems, which will dominate the allocation of resources by local commissioning groups.
From the Hansard report on proceedings in the House of Lords, 11 October 2011
The Countess of Mar had strong words to say about the treatment of people with ME/CFS in the House of Lords on 11 October 2011 during a debate on the Second Reading of the Health and Social Care Bill:
I intend to concentrate on Clause 8, which deals with the Secretary of State's duties as regards the protection of public health, and to voice my concerns about the proposals for HealthWatch. Other noble Lords far more qualified than I am have dealt and will deal with the more complex matters. I remind the House that I am chairman of Forward-ME, a loose alliance of CFS/ME charities, and patron of several charities which care for people with ME or are funding research into the illness. I also suffer from the chronic effects resulting from sheep dip poisoning.
As has already been said, I believe that the Secretary of State must take the steps listed in Clause 8, which inserts new Section 2A into the National Health Service Act 2006. It is highly unlikely but possible for him or his successors to ease themselves out of what are recognised to be very important functions because they are not obliged by law to undertake them. I am sure that the noble Earl cannot have failed to notice my frustration when I have been trying to get what I consider to be very reasonable recognition and treatment for people with myalgic encephalomyelitis or CFS/ME-sheep farmers and farm workers who are ill as a result of being exposed to organophosphates, and Gulf War veterans-only to find that no one is ultimately responsible for ensuring that they receive adequate medical treatment. It is the “Not me guv” syndrome. I find it hard to believe that in 20 years of campaigning so little progress has been made.
That is particularly so with members of the CFS/ME community. They were delighted when, in 2002, the Chief Medical Officer arranged for £8.5 million to be ring-fenced in order for specialist centres to be set up regionally for the purposes of diagnosis and treatment of this illness. Some centres were established, but several have gradually disintegrated because the hospital trusts have withdrawn continued funding for appropriate staff. This has left many very sick people without recourse to inpatient treatment in a specialist centre since the ward at Queen's Hospital in Romford was recently closed, without daycare or, in some cases, without the continuing services of a GP. Perhaps most distressing is the dearth of provision for children who frequently become very ill because they have been pushed too hard in the early stages of their illness by people who do not understand ME.
If Her Majesty's Government are seeking to improve the lot of NHS patients, it is those who suffer chronic illnesses of currently unknown aetiology, who do not respond to standard drug or other treatments, who most deserve to be protected. I can think of no other group that is systematically discriminated against by the medical profession and social services. No other illness than ME has such a big impact on the lives of so many people and yet is given such limited funding for specialist care services and scientific research.
In desperation, frustration, or perhaps, egged on by periodic dramatic pronouncements from a small group of psychiatrists and eagerly taken up by the media supporting allegations of the spurious nature of this illness, medical practitioners and social workers too frequently resort to incarcerating adults in psychiatric hospitals under Section 3 of the Mental Health Act or, in the case of children, imposing child protection proceedings under the Children Act after accusing their parents of fabricated illness ideation. They are then subjected to treatment which I believe to be excessively harsh. When that fails, the patient is accused of failing to co-operate and is abandoned by the professions.
As the Minister knows, this is not fundamentally a psychiatric condition-there is an enormous amount of international, peer-reviewed research that points towards viral or environmental toxin causation, though it is not surprising that some patients show occasional signs of anxiety or depression as do sufferers from other chronic illnesses such as arthritis or cancer. Are they made to have cognitive behavioural therapy or graded exercises without any medical treatment? Why are the international consensus criteria published in the Journal of Internal Medicine in July 2011, which laid out clearly the criteria for diagnosis of ME, and its predecessor, the Canadian criteria, rejected by NICE and the NHS?
ME is assumed to affect about a quarter of a million people in the UK. Some are mildly affected, some moderately affected and about 25 per cent are believed to be so seriously affected that they are housebound or even bedbound. There is no central register of cases so there is no accurate assessment of its prevalence. I suggest that this disease should be the responsibility of the NHS Commissioning Board to ensure that services are provided. ME would otherwise simply get lost in the sea of other much higher profile conditions such as cancer, diabetes and heart problems, which will dominate the allocation of resources by local commissioning groups.
There is a strong economic argument for ensuring that GPs can recognise and refer ME to clinics that can intervene early and mitigate the severity of the illness. This potentially reduces the levels of social care and welfare support required and, in time, should make huge net savings. A recent study by Simon M Collin et al, The Impact of CFS/ME on Employment and Productivity in the UK, showed that,
“each year 4.424 working age adults with CFS/ME might be referred for specialist assessment, and that this group would already have incurred productivity costs of £102.2 million due to their illness by the time of the assessment”.
The researchers conclude:
“The main implication of our findings is that effects on employment and productivity must be accounted for in estimates of the cost-effectiveness of CFS/ME interventions and service provisions”.
They make the point that many adults are not referred to specialist centres and that this financial estimate is very conservative. Indeed, earlier research by Sheffield Hallam University concluded that the total costs to the nation of CFS/ME exceed £3 billion when account is taken of the costs of healthcare, welfare support and social care in addition to lost earnings.
Simply looking at the economic aspects of the illness, it makes good sense to ensure early diagnosis. Research shows that early intervention by specialist teams will frequently prevent the illness becoming severe. There is clearly a need for joined-up thinking. Clause 12 inserts new Section 3B(3), which requires the Secretary of State to have regard to four key points. I think that I have made the case for ME to be an appropriate case for the board to prescribe services and facilities. It is time that the discrimination against these patients ended, and this Bill could provide just the vehicle.
It is not only patient who are systematically discriminated against, it is also ME scientists who use objective measures. All we ever see are people, including none scientists, refusing to test a hypothesis. Look at the way the hypothesis and findings of Dr Frank Ruscetti and Dr Judy Mikovits have been treated.
In Dr Frank Ruscetti’s words, “If this were HIV it would be 1983”
“Why are the international consensus criteria published in the Journal of Internal Medicine in July 2011, which laid out clearly the criteria for diagnosis of ME, and its predecessor, the Canadian criteria, rejected by NICE and the NHS?”
This is incorrect. The ICC has not replaced or updated the CCC. They are separate criteria.
I would like to thank the Countess of Mar very much indeed for this excellent speech and all the work she has done and continues to do on behalf of allof us with ME.
“Research shows that early intervention by specialist teams will frequently prevent the illness becoming severe.” Does anyone know if there is such evidence?
I think there has been little research looking at this issue.
One study was funded by the MEA: Pheby D, Saffron L. Risk factors for severe ME/CFS. Biology and Medicine. 2009;1(4):50–74 http://biolmedonline.com/Articles/vol1_4_50-74.pdf . It found the following six independent variables:
——
• Occupation (homemakers and students were over-represented in the severe category, while teachers and academics were under-represented)
• Problems with social security (problems increased the risk of a patient being subsequently severe)
• Interval between falling ill and diagnosis (a larger interval increased the risk of a patient being subsequently severe)
• Perceived value of initial treatment
• Relationship with GP before and after Diagnosis
• Involvement of a psychiatrist in initial Treatment (involvement of a psychiatrist increased the risk of a patient being subsequently severe)
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Quite a few services involve psychiatrists. Based on this research, one might conclude that attending such services would increase the risk of somebody ending up severely affected.
There is no scientific evidence for this.
I too thank the Countess of Mar for her excellent speech. Re. early diagnosis, in my own case it took about 9 months to get the Coxsackie diagnosis, and 15 months to get the ME diagnosis – in the interim I fought my symptoms and undoubtedly made myself worse. Even after diagnosis of severe ME, I did not rest or pace sufficiently and pushed myself to get back to ‘normal’ which was simply catastrophic, leading to major relapse(s). I believe if I had had quicker diagnosis and more informed advice – but it *was* mid-80s, we were all in the dark, really – I would not still have ME to the extent I have, which I describe now as moderate with severe dips. I think early intervention can only be good as long as there are no psychiatrists or GET/CBT involved – and that might be tricky, given the state of play.
I am really thankful to the Countess for her great efforts to improve the situation for people with ME.
…but of course you could still be/remain severely ill with early intervention and support. That has to be stated.
For the Countess of Mar’s information, the Pain Management Clinic at the James Cook Hospital, Middlesborough, has recently been closed. ME sufferers from North Yorkshire now somehow get themselves to the Leeds Clinic. For folk in rural areas this will be a day’s journey by public transport!
I must condem the nit-pickers and praise the Countess for all of her now long-ongoing efforts on our behalf.
Keith, Not sure if I am being condemned here, I hope not, but I was actually elaborating on my *own* comment, in case it seemed I was saying that early diagnosis ensured you would not become severe. I don’t think there is hard and fast evidence, it is more anecdotal, though as I said before early diagnosis can surely only be a good thing!
@Keith
You are correct: I should have included some sort of praise for the the CoM’s work in my comment.
However, that doesn’t mean that on the point I made, which I believe is an important one, what the CoM said is necessarily correct. And it’s now on the records of the House of Lords, people reading it here may assume it is accepted, etc. If you know of data, please say it. Otherwise, your comment, if it is directed at me, displays ignorance and a willingness to ignore the facts.