Monday, 29 August 2011

The Stigma of M.E. : Daily Telegraph's silly season gets sickeningly serious

'Protesters have got it all wrong on ME' by Max Pemberton in today's Telegraph

So, in spite of false hope over the weekend that this piece of dangerous misinformation had been withdrawn, it appeared in print to rain on the parade of thousands of M.E. sufferers this morning.

When I could get my thoughts together, I respectfully tweeted Max Pemberton earlier:

'ME & stigma of mental illness' I compliantly attended CBT/GET til the OT recognised I was (quote) "Really ill". Still v sick

Many more reactions and comments also appear in response after the article. These restore perspective to counterbalance the depth of ignorance shown here. Sadly, the headline is what many people will register as gospel truth: in shorthand, that M.E. = mental illness.

Middlewood Hospital, Sheffield, formerly South Yorkshire Asylum, more recently near to site of Fairlawns M.E. Clinic

Worse still, though I fully support removing every last ounce of whatever stigma remains for those who live with actual mental illness, this article implies I am ashamed to be associated with mentally ill friends! How is this even legal? M.E. patients are only horrified to be labelled incorrectly, to be denied hope of a future restored to the vigorous individuals we were born to be!

Max Pemberton blithely informs us:

The biggest hurdle faced by doctors is persuading people to actually attend and engage with treatment. They resist because they refuse to be seen as mentally unwell. It does seem bizarre that those with such a debilitating disease would refuse treatment because it was given by a psychiatrist. Most people are more than happy to be seen by a specialist – more than one if required.

I was offered both CBT and GET back in 2006/7 when I was first diagnosed with the illness I had been fighting on and off in boom/bust fashion for more than a decade. My GP said she had sent several patients like myself to Fairlawns in Middlewood, Sheffield, to their M.E. Clinic there. I suppose she was at a loss to offer anything more than a dose of amitriptylene to help the highest dose of painkillers to work. She would perhaps, on reflection, also have been advised to help these Government funded M.E. clinics justify their existence?

Fairlawns Medical Centre, Middlewood Road, Sheffield, with Fairlawns M.E. Clinic, part of the Sheffield Polyclinic

CBT and GET were not mentioned, by name, during my referral to the clinic. I went along compliantly to every session with the Occupational Therapist at Fairlawns M.E. Clinic on Middlewood Rd, Sheffield.

Middlewood is still synonymous in South Yorkshire with old Middlewood Lunatic Asylum, Wadsley, that our forebears knew. But I didn't resist, as this was surely merely a modern M.E. clinic based in the same location. I certainly felt no stigma. I was relieved to try anything that might help me to bear the barrage of disabling bodily symptoms which now frequently confined me to bed or to the house.

The OT received me in a room with helpfully muted lighting. She quickly realised I knew much about coping with chronic illness, from a quarter century coping with erratic hypoglycaemic attacks from Type 1 Diabetes.

She learned how I was a resilient, adventurous, successful, popular Methodist Minister. Before ordination I had been a schoolteacher and had later become the first English Methodist mission partner to live and work in Bolivia, South America in the early 90s.

The Fairlawns OT discovered how a long bout of giardiasis had derailed my health during my time in Bolivia, after which I was never quite the same. (I've read since that giardiasis was found in a quarter of US M.E. cases here though have no way of knowing if the link is significant in my case.)

Daffodils in Middlewood Park, looking towards Fairlawns Medical Centre

The OT listened how on my return from working abroad, I continued to work often long hours 24/7 after training at Cambridge in theology and for the itinerant ministry, and was ordained in 1999.

In 2000, still putting my frequent crashes into M.E.-like symptoms down to my severe diabetes, erratic since my diagnosis in 1984, down to my body's regular bad reaction to the recommended flu jab each autumn, down to frequent viral infections, I succumbed to the first of three severe bouts of shingles in my head and neck. I was sick for months with M.E.-like disabling symptoms. My second shingles bout followed in 2004 and the third most recently in 2008.

Fairlawns ME Clinic main reception to Polyclinic, Sheffield

The OT began to understand, that although I completely willingly carried out every part of the suggested Graded Exercise Therapy, filling out the provided charts and talking things through with her on each appointment in true CBT fashion, it was doing me harm rather than healing, apart from the relief of having a professional "M.E. specialist" to talk to. To be clear, the OT explained the clinic was not actually offering a cure, but a coping/pacing strategy, such as I already used for diabetes.

They treated children and adults through the centre, she told me, though I actually rarely saw anyone else waiting to be seen in the gloomy corridor. My Mum, who supported me through each journey and afterwards when crashed, sat by the water cooler when I was in the session. She never saw any other patient either, sitting in the waiting room or being checked in on those long afternoons. Were the others always in the morning? I have no idea at all.

Another M.E. Patient's recent experience of Fairlawns M.E. Clinic, Sheffield 

It was I who called it CBT to the OT, eventually, as no doubt her instructions were not to affirm the patients illness beliefs or suggest any terminology herself to influence my progress or perceptions.

She accepted with sympathy and regret how ill and relapsed these trips out to Middlewood Fairlawns M.E. clinic made me. She wondered after several such draining sessions if just phoning or emailing might do me just as much good, as spending days bed bound after each session because it took me two bus rides and half an hour on the Sheffield Supertram to get to my appointments with her, seemed to be doing more harm than good.

She said that she could see I knew as much as she could tell me in terms of understanding my condition. 

She seemed impacted by my description of my progress as like a tide coming in. The good days and the bad days (in reality just bed bound, housebound days, and self-styled "good" days when I could actually get around to do a little before my whole system was too enervated to carry on again, simply seen through the eyes of an eternally thankful optimist who refuses to moan!) 

She took on board how there were some days when the recovery seemed to come in slowly up the beach like a tide, yet the extra efforts made would then slide me back like low tide leaving me exhausted and in agony among the rock pools. Sometimes during a session she would see me struggling to function, to marshal my thoughts through the brainfog, to sit in the chair and cope with even the muted lighting. 

Once she actually exclaimed: "You really ARE ill, aren't you!" as if this came as a new revelation to her!

What does that tell you about how M.E. patients are perceived?

The so-called experts in these centres are told how CBT/GET is supposed to work, but when they are faced with the real patients, as intelligent and positive as they are, obviously not depressed or mentally ill, they still have to go through the motions and fill in their reports. Is this the truth of it?

When I was too ill to travel to my final session, the only one I missed, the OT sent my final 'end of treatment' report over from Sheffield to go on my medical records with copies for me and my GP. I was to sign my approval before it was finalised. There was also a feedback tick-box form, as I recall. I saw she had written that the "treatment" had been positive and had helped me, and that I was much better. This was far from an accurate reflection of my situation, as I thought she knew!

Sheffield Supertram bound for Middlewood

I wrote back a letter to my OT at Fairlawns reminding her what I had said about my progress through M.E, being not so much a linear improvement but a boom and bust, random tide coming in and out. Every bug I caught or effort I made could still scupper me and have me every bit as ill as before. The CBT was at best a comforting chat that was agonising to travel to. The GET was structuring what bits of activity I could manage at times, but were not achievable on other days, whatever my graphs and tick charts might say! 

It had been helpful to talk through coping and pacing strategies with an understanding professional. But it had not actually cured my illness in any way, any more than appointments with my diabetic consultants actually "cured" my diabetes. We could learn from each other, patients and doctors, but the diseases remained uncured. Neither diabetes nor myalgic encephalomyelitis is solved by these purely psychological interventions.

I would say there is value, limited as it is, in CBT, on the days, if there are such days, when you feel up to it. Others who are bed bound permanently and intubated would not even be able to contemplate such approaches, let alone benefit from them! Many tell of the deep damage that such approaches have done to their already fragile health, as they did to what little strength I had at the time. It cost more in post-exertion collapse than it helped in any way.

But suddenly, we are informed by Max Pemberton that:

It wasn’t until psychiatrists such as Prof Wessely started treating the condition psychologically that real progress was made. 
Some major brainwashing seems to have taken place here. Or maybe it's simply that headlines that have sensational death threats, hate campaigns, protests etc sell more rags than column after column of facts about scientific research or yet another story about one of these pitiable hypochondriacs who

"believe that their condition is the result of a viral infection or exposure to environmental toxins. Research to date has failed to support conclusively this hypothesis, much to the chagrin of sufferers, who feel frustrated and angry that doctors remain sceptical that this is the actual cause of the illness."

Another rehash of the same noxious fantasy Prof Simon Wessely continues to peddle. If this spoke of other races, the elderly, homosexuals or other groups in modern society, there would perhaps be well-trodden paths to protest how we are being so unjustly mocked and libelled.

There is now a growing undercurrent of robust rebuttals of this sloppy journalism and outright vilification of vulnerable M.E. patients. So there must be. From everyone who has a voice or a pen. Or we will find history rewritten in an unfamiliar typeface, using a language of contempt and denial we do not recognise.


1 comment:

  1. Thank you for sharing your experiences at the hands of our local ME/CFS services. I recognise and agree wholeheartedly all the points you raise and hope that one day the NHS will realise the tragic situations they are forcing upon hundreds of thousands of ME sufferers who have to live their lives in pain and the misery of not being taken seriously by those who are funded to help us.