ME, mental health and victim blaming

Yesterday afternoon there was a debate on ME at Westminster Hall, an annex to the House of Commons, whose main participants were Ian Swales (Lib Dem, Redcar) and the Tory health minister Paul Burstow. Swales read out a letter from Jan Laverick, a constituent who has severe ME and is well-known in the online ME community. The full debate can be read here; Ian Swales appeared on BBC Tees Radio, which you can listen to here (1hr 36mins in), and a blog response from sufferer Vikki Walker here.

Paul Burstow’s response included the following:

I want to stress that it is a neurological illness; it is not a mental health problem. I know that that suggestion causes great concern-and, campaigned vociferously against it. The strength of many people’s reaction to that label says a lot about the stigma that is still attached to mental illness, and about the attitudes of health professionals towards it. We seek to tackle those two problems in the mental health strategy that the Government have published today.

This seems to shift the blame for the stigma onto the ME sufferer who wants their disease to be seen as what it is, a physical neurological illness. If it is treated as a mental illness, their physical suffering will be overlooked and they may well suffer from the misguided mental health-oriented treatments that proved so damaging for so long. Their insights into their condition, as well as their judgement, may be called into question. It is not simply a case of ill people being offended at being perceived as crazy because they have a prejudice against the mentally ill, although people generally object to being classified as something they are not, whether that may have placed them in a more or less privileged position, which is why South African Black people who appeared white due to albinism sought to be classified as Black, so they would not be separated from their families and forced to live with strangers who were of totally different culture from themselves, notwithstanding the very distinct advantages of being classified as White under Apartheid.

Burstow then drew attention to the recent allocation of £1.5m by the Medical Research Council (MRC) into research on “CFS/ME”, but as noted in Osler’s Web, an allocation of money does not guarantee valuable research, or indeed any (similar sums were allocated in the USA for research into “CFS” but the money was mostly frittered away). It is noted (as by Invest in ME) that five of the six areas to be identified as “priority areas” (autonomic dysfunction, cognitive symptoms, fatigue, immune problems, pain management and sleep disorders) are related to symptoms, not possible causes, and bio-medical research into what causes (and therefore what could cure or even prevent) ME has not progressed much since the 1980s. Of course, symptom relief, and especially pain relief, would be more than welcome — the inadequacy of currently available long-term pain relief is well-known, and not just in the world of ME — but as a sufferer blogged yesterday, “people who have true neurological M.E … want the biomedical research, not plasters to cover over the cut”.

Burstow also said that the government would continue using the supposed WHO classification “CFS/ME”, when in fact a brief perusal of the WHO’s International Classification of Diseases reveals that CFS simply does not appear in it anywhere. ME is actually classified as Benign Myalgic Encephalomyelitis under the category of Post-Viral Fatigue Syndrome in the current version, but as Elizabeth Dowsett noted in her interview with Jane Colby for the latter’s 1996 book, ME: The New Plague, the illness is now known not to be benign (i.e. it can kill). The ICD simply does not recognise a disease called Chronic Fatigue Syndrome — that is a name made up in the USA and its various definitions are not specific to ME, concentrating too heavily on prolonged fatigue and not enough on neurological disturbance and cognitive dysfunction, which was demonstrated in countless tests of different types on those affected by the epidemic in the USA in the 1980s. According to an American neurologist, Marshall Handleman, quoted in Osler’s Web, who had performed scans on a number of “CFS” patients including airline and air-force pilots who had become too impaired to continue their work:

Patients have a wide variety of cognitive problems. They may have acquired dyslexia with left parietal lobe involvement. They have paraphasias, using the wrong word — like ‘table’ for ‘train’. They can have dyscalculia [math problems], dysgraphia [writing problems], and disorientation. They have decreased acquisition of new language from left temporal and left occipital lobe involvement, and visual-spatial perceptual problems from right parietal lobe involvement. They have attentional deficits — they can’t concentrate for a period of time that allows them to program information into their memory. They’re not doing well on their jobs because they have injury to their memory mechanism.

After explaining their mood disorders, including panic attacks, he concluded:

I want them to change the name — stop with this ‘chronic fatigue’ crap. It does a great disservice to these people. Doctors associate this term with malingering, and doctors work hard; they don’t like malingerers. What I’m saying is that this is just an old-fashioned subacute viral encephalitis. Let’s call it what it is, and let’s deal with it!

Other medical experts who have studied ME in detail will say that it is a quite distinct illness; Dr Byron Hyde, interviewed here (the captions are in Swedish, but the interview is in English), says it is an acute-onset illness which causes a diffuse brain injury which can easily be seen on SPECT and PET brain scans, and that almost all the patients had major thyroid disease, often with measurable thyroid shrinkage (he uses the term “Chronic Fatigue Syndromes” to mean those who fell ill gradually, often due to a tumour or an arterial obstruction). A further distinct symptom of ME is post-exertional paralytic muscle weakness, described by Dr Melvin Ramsay who defined ME in the 1950s as the “sheet-anchor” of ME diagnosis, saying that “without it a diagnosis should not be made”. This is not only significant from a healthcare perspective but also in assessing someone for eligibility for benefits, as someone may appear capable of doing some kind of work while fairly inactive at home but may suffer a relapse from travelling or from long spells of activity, even if sitting down. Many ME sufferers (and others with less than obvious disabilities) have complained that the present assessment for Disability Living Allowance seems designed to exclude as many people as possible; if the aim is to get people off benefits, the government should at least be trying to find suitable work for them, which in the case of ME sufferers may well be very limited indeed, if there is indeed any.

There is another side-swipe at the patient community further into Burstow’s speech (in column 328WH):

The expert group can only achieve so much on its own and, if I may be blunt, there has been a history of fractiousness and fragmentation between different groups with an interest in the area. Often, it is easy to agree on what we do not like, but harder to agree on the common ground and what the course of action should be to change things. I understand the heightened emotions that are often articulated by constituents who suffer from the condition, and I have spoken about that to people in my surgery. However, we will not achieve anything if organisations do not work together and engage with one another to find common ground and build alliances.

From my observation of the patient community, it is actually fairly united and people are generally friendly to each other, regardless of whether someone belongs to AYME or the Tymes Trust or the 25% Group or whatever (or more than one of those). Broadly speaking, there is distrust of the leadership of Action for ME (AfME) and the Association of Young People with ME (AYME) — both of which were once very well-valued organisations — as they have drifted towards accepting a pro-establishment, fatigue-oriented view of what is and is not ME, towards denying that there is really such as thing as ME (despite their names) and towards promoting harmful, or at least ineffective, ‘therapies’. Some of the groups specifically represent sections of the ME community, such as children and young people (such as the Tymes Trust) or the severely affected (the 25% ME Group) and others are focussed on raising money for biomedical research (Invest in ME, ME Research UK), but there is no fragmented patient community with mutually hostile factions; it is a question of the leaderships of two particular groups being out of touch with much of the patient and carer community.

So, Burstow’s whole speech was a round-about way of saying that it’s business as usual, that there is no change in policy or commitment to research into the biomedical causes of ME; merely a lecture to the patient community to “get behind” them and stop fighting (which they are not doing). Bland statements about accepting that ME is a neurological illness (the DWP site already confirms that they regard it as physical and not psychological) will not convince doctors that it is, let alone that it is a distinct condition that does not require the elimination of several other conditions before a diagnosis can even be considered, nor protect suffering children from being removed from their families because social workers or doctors groundlessly suspect factitious illness, nor ensure that ME sufferers who are not obviously bedridden are not denied the benefits they need. His speech is a long-winded way of not saying very much.

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