19 april 2010


ME: On having severe ME

Yesterday there was no Nederlog because I wrote rather a lot on the Phoenix Forums about ME - where one can find what I wrote here, if it works

  • Maarten Maartensz's posts on the Phoenix Forums (and the 'Find All Posts')

There was (and still is) a considerable discussion on the Phoenix Forums around GET and CBT for which see

and for which see also see Kim's

  • Excerpts: Exercise quotes from the Big Talk

to get an idea of what is involved and why it is important, for persons with ME.

For more of the same, and since I am not well, is here "The Welsh Wizard" a.k.a. Gerwyn, a very intelligent and learned Welshman. Here is a post of his of today on Severe ME:

Gerwyn on having severe ME: - Link to the origin

In anyone with a mitochondrial disorder the amount of aerobic excercise they can tolerate is limited by the degree of mitochondrial damage. Push them beyond that limit will further damage the mitochondria possibly irreparably. About 25% of ME sufferers are either housebound or bedbound.

The following is from the 25% ME group and may give a small insight of the suffering of people severely affected by ME..

It has personal resonance for me as I have been there

People with severe ME will need help with personal care. When you are helping them, remember that all their muscles are very painful to touch. Please be very gentle. Try to work quickly and quietly, so they don't get tired... and be sure to keep them warm.

Depression in M.E. is usually a result of expending too much energy and is different from other types of depression, in that the person is most helped by rest and not by being encouraged to undertake more activity. This is because the depression is a result of doing too much. If the person does even more, the depression will increase.

Please remember that people with severe M.E. have difficulty propelling a manual chair due to weak arm muscles. If a manual chair is used, they would need to be pushed in it.

Imagine how you would feel if ...

... you got a bad virus: were so weak you could hardly walk; felt as if you had lead strapped all over your body; felt ill, in pain and sick all the time; and didn't even have the strength to get off the bed to go to the toilet... You'd expect to be better in a week or two, wouldn't you? So did I, but I was still the same years later.

... you wake up every morning feeling as if you'd been run over by a bus and had a general anaesthetic the day before.

... every muscle and joint in your body aches - your arms, your fingers, your legs, your neck. You have frequent headaches. You feel heavy as though extra gravity is pulling you down all the time. You feel dizzy if you stand or sit upright for any time, and there are no magic pills to make you feel better.

... you are cold and shivery a lot of the time - even with central heating and hot water bottles

... you constantly feel sick and dizzy and it gets much worse when you try to read, listen to music or radio, watch TV or have a conversation.

... any movement - even moving your arm - causes extra pain, saps you and makes you feel sick

... you're thirsty all the time, but reaching for a cup is impossible, or causes malaise or severe pain.

... you need to go to the toilet a lot, but you're often so weak you can't even turn over in bed

... you wake up in the night drenched with sweat, and shivering, but are too weak to have the bedclothes or your nightwear changed.

... you require help from other people just to cover your basic needs, but you get exhausted from the interaction this requires - sometimes you're so weak that they can't hear your voice. Even if you write things down for them, they still have questions.

... even with help from other people, having a bath or shower totally exhausts you, and sometimes you are suffering so much pain or weakness, that you can't even be washed in bed.

... your brain can't process information going in - so noise, movement and other stimulants make you feel sick, dizzy, and stressed. Even on good days - TV, music, people talking/moving can be like torture.

... you sometimes can't remember things like your name, your family and don't recognise people.

... you have to read things over and over, because you can't remember the beginning by the time you get to the end.

... it's a major achievement to make a short shopping list

... if someone asks you if you want blackcurrant or orange juice, you would get confused, because you can't remember both the options

... you can never find anything, because you forget what you're looking for as soon as you move your body to look for it. Even if you don't forget, just scrabbling about the bed for a pen can make you so exhausted that you have to lie flat for 20 mins

... Light can cause a dreadful migraine-type headache, nausea and acute pain in your eyes;

... Everyday sounds, like voices, can thunder through your head causing thumping pain;

... you constantly try to explain to people what your limitations are, so that they'll be a bit more sensitive to your needs, and they just think you're moaning...

... you have abnormal reactions to foods, dust, chemicals etc. which cause severe malaise and nausea.

... minor infections and viruses render you so ill that you require 24-hour care for months

... you have to struggle with feelings of frustration, despair and anger caused by healthy, active people saying things like "lucky you - not having to work" or "everyone gets tired - that's normal!"

... If you push yourself at all you develop worse problems e.g. blistered eyes and joints, acute pain, vomiting, migraine, muscle spasms, neuralgia, convulsions, faints, anaphylactic shock episodes, etc. At times your whole body seems to stop working... menstrual cycle, digestive processes, etc.

... People who know nothing about the condition keep telling you to try harder

... you spend each day yearning for all the things you've lost - independence, working life, hobbies, relationships, interaction with others. You'd love to be able to do more or go out, but it exhausts you so much that it can take days or months to recover. You can be stuck at home for months or years. ... Children can have ME too, and miss going to school, seeing their friends and playing.

Those are only some of the problems which face people with severe ME every day of their lives.

I know because I have been there every movement was agony and i could not lift my arma let alone stretch.

As for aerobic excercise and heart conditions if you push someone with stable or unstable angina,ventriculat tachcardia and so on to engage in aerobic excercise you could kill them



As you may have gleaned severe ME is horrible indeed. I have not been as deep as Gerwyn, but that is not thanks to the Dutch medical, political or bureaucratical institutions, and I have been well on the way to go as deep, thanks to the Dutch medical, political or bureaucratical institutions and to the pseudoscience of Wessely and co. and Bleijenberg and Van der Meer.

See also

  • Yodeling for Beginners
    (latest issue - one: ME humor - The Laughter Process (tm) CoFIBS  at work).

And some of the evidence that Herr Professor & Frau Doctor Wessely vom Weasel zum Weisel are mentally sane if and only if (iff) I am not - as they wholly agree, miraculously almost!

But see here which of the two logical alternatives a true iff comprehends applies:

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)

Short descriptions:

1. Ten reasons why ME is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.

"Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)

Maarten Maartensz

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