ME and Ophelia

Thursday, May 19, 2005

By a blogging pathologist

Madhu always has neat snappy titles for her posts at ChaiTeaLatte. Her latest is 'MAN IN A PAN'. Heh.

Great Madhu. Thanks. I am still waiting for the day you do an autopsy on someone who has suffered Myalgic Encephalomyelitis, or Myalgic Encephalopathy (ME) aka Post Viral Fatigue Syndrome (PVFS) or Chronic Fatigue Immune Dysfunction Sydnrome (CFIDS). I would like to know the findings in the brain and spine.

Many ME sufferers have offered to donate their bodies after death for medical research but, as far as I am aware, the medical profession is not interested. How will there ever be an effective treatment or a cure if doctors do not know how ME works?

World Health Organisation classes it as a neurological disorder. My GP says he does not understand ME. After five and one half years, I probably know more about it now than he does. A cartoon in a recent ME magazine showed a sufferer sitting up in bed wearing a Sherlock Holmes hat and cloak, clutching a teddybear, hot water bottle, and a magnifying glass. (I quite understand if I am the only one here who finds the cartoon hilarious).

One of officialdom's excuses for lack of physical research into ME is that doctors do not need to know the cause of a disease to treat it - say, like cancer. My view on that is, cancer can be diagnosed and pinpointed in the body giving a good clue as to how/where best to target treatment. There is no diagnostic tool for ME. It is done through a process of elimination. They run tests to rule out everything it could be. So, after six months of debilitating illness they find nothing, label it as chronic fatigue (ME is separate from Chronic Fatigue - tiredness is the least of ones problems with ME) and tell you there is nothing they can do. To go away and come back if something else crops up that they can help with. They've been telling people this for well over 50 years, despite strong indicators an enterovirus is the likely culprit, probably Coxsackie B.

You ask when will you get better, their answer is "how long is a piece of string?" Other doctors tell you it will burn itself out in a year or two. But this is not true for thousands of people. Nobody warns you. They just leave you to manage your own care and find out things the hard way. Two years down the road, when you become housebound you get to wondering about why nobody has mentioned the word wheelchair. [Three years ago I called the social services for advice on where to get a wheelchair: "what for?" asked the woman, cutting to the chase -- "because I want to go out" I wailed -- "and WHO will help and push you?" the woman snapped. I've not called a health professional since.]

Intense fatigue is the least of your problems. It feels as if the body is attacking itself inside (they say it is the immune system attacking itself). I tell you, you just want to jump out of your skin and into hell. Not because of the pain but how it affects your life and ability to do even the most basic activity, including conversing and being in the company of people. Recently, I found that leukemia symptoms seem identical to ME. The fatigue is so intense at times you barely have the energy to breathe, nevermind talk.

Severely affected folk describe ME as a living death. Nothing can be done. Very little research. These days, when almost everything can be fixed, people don't believe you when you tell them there is no treatment. They say, "oh but there MUST be something that can be done. Times are changing all the time. Progress is made. Perhaps they've got the diagnosis wrong." Most people (including two doctors I've seen) say they don't understand ME. I don't understand AIDS either but it does not stop me from feeling compassion for those who are HIV positive.

Of the conditions I know of, I have never come across one such as ME that involves so much suffering with so little care, compassion and attention. The only condition that springs to mind is leprosy. Sufferers used to be shunted to colonies and left to fend for themselves. That's what suffering severe ME feels like. I know, because I have talked to others in the severe ME colony who agree. We simply get too ill and too difficult to manage and be around. Few people know how to help. We can't be helped.

One research study concluded the quality of life for a severely affected ME sufferer is comparable to the last two weeks of end stage AIDS. The misconceptions and disbelief, even from health professionals makes for a great lack of compassion.

I've read somewhere that compassion is the greatest healer.


This post is my contribution to ME Awareness Week May 9-15, 2005.

Note, ME has been formally classified by the World Health Organisation as a neurological disorder in the International Classification of Diseases (ICD) since 1969 (ICD-8: Vol I: code 323, page 158; Vol II (Code Index) page 173). On 7th April 1978 the Royal Society of Medicine held a symposium on ME at which ME was accepted as a distinct entity.

M.E. is a condition of many names. It is commonly known as:

Myalgic Encephalomyelitis (ME)
Myalgic Encephalopathy (ME)
Post Viral Fatigue Syndrome (PVFS)
Chronic Fatigue Syndrome (CFS)
Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)

Other names include:
Yuppie Flu – this term is (hopefully) no longer used.
Royal Free Disease
Icelandic Disease
Epidemic Neuromyesthenia
Tapanui Flu

Read more about it here at the M.E. Association UK.

If you or anyone you know (sufferer or carer) needs help or advice please contact the 25% ME Group national charity and support group for the severely affected ME sufferer. You can join as an Associate member, even if you are not severely affected with ME.
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Let's all be hummingbirds

Here is a copy of one of my favourite recent posts at Sudan Watch blog:

Warm thanks to Ansel in America for this Japanese story, courtesy of Wangari Maathai:

When the forest where the hummingbird lived went up in flames, the other animals ran out to save themselves. But the hummingbird stayed, flying to and from a nearby river with drops of water in its beak to pour on the fire.

From a distance, the other animals laughed and mocked it. "What do you think you are doing?" they shouted. "This fire is overwhelming. You can't do anything."

Finally, the hummingbird turned to them and said, "I'm doing what I can."

[We can all be like the hummingbird, doing whatever we can says Wangari Maathai, the 2004 Nobel Peace Prize laureate, is Kenya's deputy minister for environment, a member of parliament for the Tetu constituency, and founder of the Green Belt Movement.]

P.S. See Ansel's Hedgemeiser ... ah... Ophelia would would love it.


# posted by Ingrid J. Jones @ 5/19/2005
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