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Jessica is overcoming severe ME to walk down the aisle

Discussion in 'News Feed' started by BBC News - Kent, Apr 15, 2017. Replies: 1 | Views: 26

  1. BBC News - Kent

    BBC News - Kent New Member

    Jessica Taylor-Bearman is learning to walk again after being bedridden for more than a decade.

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  2. Nancy Blake

    Nancy Blake New Member

    This news report is dangerously misleading about the nature of ME.

    The US Institute of Medicine report 'Beyond Myalgic Encephalomyelitis/Chronis Fatigue Syndrome: Redefining an Illness' is clear that this is a serious, disablimg disease.

    It is not a psychiatric disorder (somatoform, functional, medically unexplained.)

    The defining fact about this disease is that 'exertion of any kind - physical, cognitive or emotional - may adversely affect many organ systems'.

    There is no need to 'learn to walk'.

    In ME it is essential to minimise the use of muscles to avoid further severe damage to 'many organ systems'.

    If a person with ME wants to perform a physical act, it is essential to rest as completely, before and after, if a severe and permanent relapse is to be averted.

    Received wisdom is that gentle, gradually increasing aerobic exercise will improve muscle function.

    In ME, the aerobic metabolism is not functioning.

    Even minimal exertion invokes the anaerobic metabolism, making minimal exertion the equivalent to running a marathon, or extreme weight-lifting, with oxygen starvation, lactic acid build-up, and proportional damage to the whole body.

    Many of the severely and very severely ill patients (completely incapacitated, enduring severe and intractable pain, spasms, intermittent paralyses, pain made even more severe by light, sound, or even the presence of another person) only became this sick after following a programme of Graded Exercise Therapy.

    People do not 'overcome' ME by practicing any form of exertion...they make it worse, potentially much worse.

    People who rest as much as possible and minimise physical exertion as much as possible are the ones who gradually improve.

    There is evidence that this may be because when all our energy is made available for our immune system to seek out and fight against an elusive virus, it can make some progress. Complete rest from the inception gives the best prognosis.

    Unfortunately there is a powerful group of psychiatrists in the UK who are able to create and maintain the myth that our illness is in our minds, and that pretending we aren't sick, and 'increasing activity' is appropriate.

    I'm still trying to find the people who have been cured this way.

    Jessica, go back to bed until the day. BBC, do your job...interview her in a year's time and let us know how she is then....if she hasn't become too sick by then to cope with an interview. Because this is where she is heading.

    http://www.nhsmanagers.net/guest-editorials/a-radical-care-pathway-for-mecfs/
     

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