"No Total Rest" prescription is irrelevant to acute ME

From Ciara MacLaverty, June 2005

It's been almost 20 years since I was first diagnosed with ME. The controversies surrounding causes and management of ME have raged through the decades but one fact remains constant: I took a virus in 1987 and I have never had a day's full health since then. My health appears to be permanently damaged. Ditto hundreds of thousands of sufferers.

I want to express my concerns over the widely touted dictate that "Total and/or Prolonged Rest is counter-productive in ME."  Even some of the moderates, who are firmly in the "ME is a serious physical illness" camp, can advocate this position. The "No Total Rest" (NTR) approach simply does not apply to my experience of severe ME.

When I was in the acute phase of ME I was bed bound for 3 years. I was wheeled to the bathroom on an office chair. It was such an ordeal that I would wait until I was "bursting" before I would ask to go. I was in pain and excruciating malaise for every waking moment. The pain in my head was searing. I felt as if my brain was "burnt" and inflamed and nothing would lessen the pain. My consultant assured me that NHS tests showed "no evidence of inflammation," and he suggested that I couldn't be feeling this kind of pain.

I couldn't read, watch TV or listen to the radio. I had to wear earplugs as household noises caused surges of acid-like pain in my head. I could barely speak. If I was propped up in bed, I nearly passed out. I sometimes vomited as a result. I ate normally but I was thin as a famine victim. I was relieved that I could chew my food, as I had heard of many with ME who had to be tube fed. I ate lying down and often couldn't hold a knife and fork.

I could only lie on my right hand side in the foetal position. (I knew I was getting slowly better when I could tolerate lying on my back or my left side). I longed for a bath and was mortified that my hair was unwashed for so long. I could only tolerate an occasional bed bath. A barber was called in to cut my long hair to a crew cut as it would be easier to manage.

When I finally started to heal it was NOT because I got out of bed and started "gentle exercise." The pain in my head began to lessen by small degrees, and I would find, to my delight, that I could watch ten minutes of TV or tolerate half an hour without ear plugs. I believe this slow healing within the brain happened because I gave my body the best chance. I was told that I might never regain my muscle wastage. My legs muscles came back to normal bulk after 3 years  but only after my acute brain symptoms had lessened their raging and I was able to get up for short periods.

When I hear the "No Total Rest" prescription I get exasperated as there are so many cases where this is wholly inappropriate. For years I longed to have baths, watch TV, get up, talk, listen to music, read (who wouldn't?!) but I simply could not do any of these as my symptoms were so acute. The pain and the feelings of being acutely "poisoned" were really indescribable.

In recent years I took part in Dr Chaudhuri's  research project, undergoing a SPECT scan. The scan showed an abnormal choline peak, indicative of ongoing inflammation.  I knew that the sense of brain inflammation I had in the first 3 years of ME was utterly crippling on a scale that is extremely difficult to convey. I felt as if I had acid running through my brain. I just wasn't believed.

Doctors who want to prescribe "No Total Rest" to patients in my position should start by listening to the patient. How ill must a person be when they have to shut down all meaningful interaction with life, forgo all of life's pleasures and lie, barely moving in the dark for several years? Does that sound like a rest? Or any kind of a choice?  I realise many doctors are trying to help but clearly it's time for a different approach.

In many cases of ME the "No Total Rest" theory just doesn't apply. The inability to get out of bed is not a consequence of the disease. It is the disease.

Ciara MacLaverty.

(Ciara MacLaverty has had ME since 1987. She lives in Glasgow, Scotland. See also- http://www.cfids-cab.org/MESA/adv7.html ).