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Countess of Mar's Formal Complaint to the BBC

2

2kidswithME

Messages
63
Location
Oxfordshire, England
I've finally Looked up more about her, Wikipedia has an article, but you need to search for Margaret of Mar. Very interesting history, she fell ill after splashing organophosphate sheep dip on her foot in 1989.

We lived in South Asia when my children were small, where there was no effective regulation of pesticides etc, so I have wondered if our diet of local produce meant we were exposed to who knows what, and this was a factor in two of my three children falling ill. (The other had unexplained spells of being poorly thru his teen years, but never tipped into ME like the others did.) there is also a family history so they had two counts against them.
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
2kidswithME said:
I've finally Looked up more about her, Wikipedia has an article, but you need to search for Margaret of Mar. Very interesting history, she fell ill after splashing organophosphate sheep dip on her foot in 1989.

We lived in South Asia when my children were small, where there was no effective regulation of pesticides etc, so I have wondered if our diet of local produce meant we were exposed to who knows what, and this was a factor in two of my three children falling ill. (The other had unexplained spells of being poorly thru his teen years, but never tipped into ME like the others did.) there is also a family history so they had two counts against them.
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Interesting. A very good doctor we once had, advised to try and eat organic if possible. Maybe this is what was on his mind.
 
slysaint

slysaint

Senior Member
Messages
2,125
Couldn't find the thread on the FITNET coverage but accidentally have come across a link to an ITV article (on the article posted by charles shepherd[ http://www.netdoctor.co.uk/healthy-...l&utm_source=twitter.com&utm_campaign=buffer] that says :

"However, recent breakthroughs in research – most notably the landmark trial of intensive online therapy, found to successfully treat two-thirds of teenagers suffering with the condition – saw ME hitting headlines at the end of last year.")

http://www.itv.com/news/2016-11-01/chronic-fatigue-syndrome-online-treatment-to-be-trialled/

extract:
"
The Dutch study found around two-thirds of patients (63%) had "recovered" using FITNET (Fatigue in Teenagers on the Internet) versus 8% in normal care after six months.
Most children with the condition - also known as myalgic encephalomyelitis (ME) - will recover if they are treated with specialist methods which change their behaviour around things like exercise, sleep and general activities."
"
However, a group of activists have raised questions over using psychological treatment for a biological disease.

Professor Crawley said: "There is plenty of evidence now to say this is a real illness. But just because this is not a psychological illness, that does not mean psychological therapy cannot help - that is true throughout medicine."


Has anyone contacted ITV to put them straight on the truth about the Dutch study and that it is not just 'a group of activists' who have 'raised questions'.?
 
A

ash0787

Senior Member
Messages
308
presumably she means real illness in the same way that hayfever is a real illness or acne or athletes foot etc,
as the treatments suggested seem to be on the same level, although you can actually get medicine for those ailments.

I don't see how the public dont see right through it, a simple look on google and they would see that its not comparable to something like sleep deprivation or being overweight or something
 
Deepwater

Deepwater

Senior Member
Messages
208
ash0787 said:
presumably she means real illness in the same way that hayfever is a real illness or acne or athletes foot etc,
as the treatments suggested seem to be on the same level, although you can actually get medicine for those ailments.

I don't see how the public dont see right through it, a simple look on google and they would see that its not comparable to something like sleep deprivation or being overweight or something
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The term "real illness" has been used by the BPS school in the UK to describe ME for many years now. I was conned by it in the beginning. It's used to put patients off their guard, gain their trust, before - wham! - the doc offers GET/ CBT/ Prozac as a treatment. It means something like "real to the patient" or "causes real symptoms"; it does not mean that they see it as a normal biological illness. I know what it means now, but initially I was taken in, and it is a very cruel ruse. New doctor, actually appears sympathetic and forcefully agrees with you that it's real. Finally you think you've found a doctor who believes in ME and is going to try to help you after years of neglect and disdain. It's a very emotional moment, and then suddenly they hit you below the belt.
The first thing you need to understand about the British BPS school is the shameless, and consistent (i.e. orchestrated) way they play with the language.
 
U

user9876

Senior Member
Messages
4,556
Cheshire said:
So when patients use the term "real" illness, (vs psychiatric one) they are told they are anti-psychiatry. But Crawley has the right to do so. Despicable.
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The 'real' debate feels like something they have introduced to delegitimise patients. They they to dismiss patients objections to their work by saying patients object to the psychological label.

But the real issue is about treatments that work or don't work. They imagined a mechanism with no evidence, tested treatments using bad methodology and then lied to patients about the results. There is no evidence for their theories or treatments.
 
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