M.E. Royal Free

For anybody who suffers from M.E. (also known as chronic fatigue syndrome)or knows somebody who does BBC Radio 4 magazine programme, You and Yours broadcast a series of programs on the subject. You can listen to the audio and there are also full transcripts. Here is David Puttnam (now Lord Puttnam) the film producer talking about the onset of ME.

I’d just come back from a trip to the Far East, I was at Columbia Pictures at the time, and I got – I’d only been back I think a day, day and a half – and I suddenly came up with this tremendous fever, it was extraordinary. And the doctors first of all – first of all being tested for Dengue Fever. I just remember dragging myself into bed and then for about a week – and this is not an exaggeration to say – when I needed to go to the loo it was literally like climbing Everest, I was – by the time I’d climbed back into the bed, been to the loo, I was covered in sweat and utterly exhausted, I was sort of dragging myself across the room. David Puttnam on You and Yours, BBC Radio 4

While still a novice monk at Shasta Abbey I came back to England on a ‘family visit. It was 1986 and I remember distinctly reading an article about M.E. in the Sunday paper. At that time this crippling condition was not well known about, in fact it was still being called the Royal Free disease. So named after an outbreak of a strange disease at the Royal Free Hospital in London in 1955. There was much speculation, as there still is, about this condition being all being in the mind. As a fledgling priest I predicted I’d be counselling people while on their journey to get a diagnosis for their unrelenting, and strange, symptoms.

As it has turned out, over the years, I’ve had quite a lot to do with people suffering from M.E. I’ve a great sympathy for the mental/emotional suffering, as well as the physical conditions that these people live with, day in and day out. Come to think of it I even diagnose somebody as I was driving from Throssel to catch a train. We were chatting back and forth about his health and I just said, Hum, had you thought this might be M.E.? Turned out it was, sad to say.

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4 thoughts on “M.E. Royal Free”

  1. Hi Rev Mugo,

    I’ve been enjoying your bog for sometime and thinking about ME and how my zazen practise might help but not got the courage up to contact the Abbey.

    I have recently been diagnosed with CFS/ME and did listen to the radio 4 programmes. The initial one with Lord Putnam put the cat amongst the pigeons (sufferers and carers) on the Radio 4 message boards. If only it was as easy as a month in Hawaii and a home in rural western Ireland! However the coverage over the week was more balanced and interesting but left more questions than it answered.

    As you seem to have some experience with ME sufferers I wonder if you could possible give me some guidance? I’ve been unable to make the Abbey or my local group for some time due to my health but sit regularly at home.

    I’m not sure of the best way to contact you but my email addy is kev.serg@ntlworld.com if you ha the time to get in touch I would much appreciate it.

    Gassho, Kevin

  2. Just to say that Throssel Hole Buddhist Abbey is pretty disability friendly. There are some separate rooms for people who need them & a lift in the guests building. There is also a stair lift to the meditation hall. The only snag for me is there can be a lot of walking along corridors but if you ask for help things can be managed. If you can get to the monastery & explain beforehand to the guest master what your needs/ limitations are s/he will do what is possible to make you comfortable. Of course it is still very tiring & I had to take responsibility for my own well-being – as we all do anyway.

  3. Thanks for that Angie. Something my wife has basically said too.

    I guess my problem is my ego, in that I don’t want special arrangements LOL! Something I need to sit with, as I have been wanting to do a retreat there for sometime.

    Gassho, Kevin

  4. I understand. I don’t think anyone with disabilities wants special treatment or fuss and we need to have it sometimes. However, at the monastery there are others there too needing special arrangements so you would not be alone. Some of the monks struggle too with health difficulties.

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