BBC Radio Northampton phone-in with Charles Shepherd

Sly Saint said:
article in The Northern Echo:
"
New hope for sufferers of ME

RECENTLY a 21-year-old woman became only the second person in the UK to have a diagnosis of ME recorded as the cause of death. Family describe Merryn Crofts from Rochdale, who died in May 2017, as a “live wire” until she contracted the illness at 15, going from a bubbly young girl to a wheelchair in six months, and confined to her home within a year."
"
Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are approved treatments and have been found to be very effective.

Both of these should be offered by professionals with a specific understanding of ME. Incorporating rest periods into the day also allows people to pace themselves and lessen the overwhelming fatigue.

This is different from sleeping during the day, which ideally should not be encouraged as it worsens night time insomnia.

Researchers in America have identified that people with ME may not metabolise nutrients as effectively as those without ME, and this may be a cause of or contribute to their symptoms.

A recently developed blood test was shown to be 84 per cent accurate when 50 patients with ME were compared with control individuals without the disease.

Many people report a degree of relief once they have a diagnosis, as it allows them to better understand their symptoms."

http://www.thenorthernecho.co.uk/news/16401152.new-hope-for-sufferers-of-myalgic-encephalomyelitis/

Didn't deserve its own thread, very odd article in that I can't see where the 'New Hope' is and it seems to be mostly a 'comment' taken from elsewhere (?)
another case of bad journalism.
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@Russell Fleming @Action for M.E.
Indicates how much has to be achieved in educating GPs and medics as written by a GP.
Perhaps a letter to the Northern Echo from an ME charity ( or both) to set the record straight is warranted?
 
NelliePledge said:
oh no thats even more frustrating @Amy101 some GP getting money on the side for regurgitating bits of other peoples articles and giving it fake credibility as coming from a medic maybe you could invite them for a chat to educate them about ME?
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I’ve left a comment on there as have others. Hopefully the person who wrote it will read them, and even if he chooses not to listen or believe what people have said, at least the comments are there for the public to see. It’s just ridiculous that in this day and age there is still so much ignorance!
 
Sly Saint said:
article in The Northern Echo:
"
New hope for sufferers of ME

RECENTLY a 21-year-old woman became only the second person in the UK to have a diagnosis of ME recorded as the cause of death. Family describe Merryn Crofts from Rochdale, who died in May 2017, as a “live wire” until she contracted the illness at 15, going from a bubbly young girl to a wheelchair in six months, and confined to her home within a year."
"
Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are approved treatments and have been found to be very effective.

Both of these should be offered by professionals with a specific understanding of ME. Incorporating rest periods into the day also allows people to pace themselves and lessen the overwhelming fatigue.

This is different from sleeping during the day, which ideally should not be encouraged as it worsens night time insomnia.

Researchers in America have identified that people with ME may not metabolise nutrients as effectively as those without ME, and this may be a cause of or contribute to their symptoms.

A recently developed blood test was shown to be 84 per cent accurate when 50 patients with ME were compared with control individuals without the disease.

Many people report a degree of relief once they have a diagnosis, as it allows them to better understand their symptoms."

http://www.thenorthernecho.co.uk/news/16401152.new-hope-for-sufferers-of-myalgic-encephalomyelitis/

Didn't deserve its own thread, very odd article in that I can't see where the 'New Hope' is and it seems to be mostly a 'comment' taken from elsewhere (?)
another case of bad journalism.
Click to expand...
The article feels kind of parasitic, riding on the back of such a very genuine and very sad event, to promote GET and CBT-a-la-PACE - what a travesty, what an insult. To me it is not just about which GP wrote it, but more about who/what motivated them to write it.
 
While it is good when an official cause of death is given as ME we all know that it should be listed as a secondary cause at least on the death certificate of every one who had ME and the only reason it isn't is because of the politics of the disease.

Very few people with MS die of MS itself, in fact most people with cancer don't die from the cancer but because of pneumonia. But when someone has been bedridden with ME for 20 years but it is not included on the death certificate it is ludicrous.

I have high blood pressure, high cholesterol and diabetes. If I was well, I would be cooking very healthy meals (My diet is good when I am well enough to make it but I take what I get when I am too ill) I would love to exercise, to go swimming every day, join a gym but I sit or lie about all day.

Whatever kills me, it would be beyond stupid to think the lifestyle imposed on me did not contribute.
 
Until recently dementia wasn’t very often recorded as cause of death often pneumonia would be the immediate cause. we need to find out what happened to change that. Wondering if it would be worth me writing to Alzheimer’s charities to ask?
 
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