UK: The Wright Stuff 19th March - Does M.E. still carry a stigma?

sarah darwins

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It's available online now.
The ME/CFS segment starts at 1:01:15 mins, once you get through the annoying adverts:
http://www.channel5.com/shows/the-wright-stuff/episodes/episode-54-87
Thanks, Bob. I forgot Channel 5 has an online player (presumably UK only). Will watch later and will probably try an 'encouraging' note to Ms Dorries, but I'm still trying to educate myself about the current situation so will limit myself to a plea that she talk to a few people not directly involved with current NHS policy.

Actually, come to think of it, that seems like a good question. Whom should she (or any other MP with an interest) talk to for a balanced (not so NICE. not so SMC) view?
 

user9876

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Thanks, Bob. I forgot Channel 5 has an online player (presumably UK only). Will watch later and will probably try an 'encouraging' note to Ms Dorries, but I'm still trying to educate myself about the current situation so will limit myself to a plea that she talk to a few people not directly involved with current NHS policy.

Actually, come to think of it, that seems like a good question. Whom should she (or any other MP with an interest) talk to for a balanced (not so NICE. not so SMC) view?
You could remind Ms Dorries that around 400 people in her constituency are likely to have ME,

http://forums.phoenixrising.me/index.php?threads/uk-general-election-in-may.35790/#post-562993
 

Revel

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Bewildering telephone conversation this afternoon:

Revel's Mum: "I've just watched 'The Wright Stuff'. I had no idea that ME could be so serious and that people didn't always recover from it."

Me: "But Mum, I've had ME for over 40 years!"

Revel's Mum: "Yes, dear, I know. I just thought that you were odd . . "

Thanks Mum :meh:.
 

sarah darwins

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Oh dear ... I just watched the segment (it's only about 14 minutes) ... I had forgotten how concerned Nadine Dorries always seems to be with her own importance.

She's also entirely focussed on care in the home - "what is needed are experts and specialists in providing that type of care ...". While welcome in itself for severe sufferers, it's the same old distraction from the real issue, isn't it? Credit to Wright, he tries to make the point, but then he is tending to focus on research spending. Again, really important, but those elephants in the room — the front line response of the NHS to pwME and the false characterisation of the illness — are being ignored.

At one point Nadine says something like "according to the figures I've been given" ... and that's why nothing's changing, I guess. People like her, who might be able to start changing the situation, are being fed the same misinformation from the same old sources.

If I knew nothing of the illness, I think that item would have left me with the view that the main question was whether we're spending enough money on home nursing care, and that maybe a bit more research would be nice.

The shame is that Matthew Wright seems like he might be willing and able to do a really important in-depth show on this subject. But it was a case of 15 minutes, give everyone a turn regardless of whether they know what they're talking about (Nadine) and on with the next segment. Ain't live TV great?

Anyone got Jacques Peretti's email? The Men Who Made Us Think M.E. Was All in the Mind is a documentary begging to be made.
 

Revel

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Well, curiosity got the better of me. I was interested to see if Nadine Dorries had been contacted on Twitter regarding her performance yesterday.

She was asked where she had obtained the statistic that 97% of ME sufferers eventually recover. She replied that it came from a very trustworthy and reliable source, the parents of a child with ME in her constituency. They had apparently been told this 'fact' by the consultant treating their child.

Ms Dorries went on to say that she would rather place her confidence in the parents, who she says are "extremely knowledgeable", than on the people leaving messages on her account suggesting that this statistic is false and that she should probably check her facts more thoroughly in future.

She now says that she is done with this question and refuses to be drawn any further on the subject of ME, owing to the "aggressive" nature of the comments that she has received.

I did not see a single "aggressive" post, just a handful of ME sufferers unhappy that they have once again been misrepresented.
 

user9876

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Well, curiosity got the better of me. I was interested to see if Nadine Dorries had been contacted on Twitter regarding her performance yesterday.

She was asked where she had obtained the statistic that 97% of ME sufferers eventually recover. She replied that it came from a very trustworthy and reliable source, the parents of a child with ME in her constituency. They had apparently been told this 'fact' by the consultant treating their child.

Ms Dorries went on to say that she would rather place her confidence in the parents, who she says are "extremely knowledgeable", than on the people leaving messages on her account suggesting that this statistic is false and that she should probably check her facts more thoroughly in future.

She now says that she is done with this question and refuses to be drawn any further on the subject of ME, owing to the "aggressive" nature of the comments that she has received.

I did not see a single "aggressive" post, just a handful of ME sufferers unhappy that they have once again been misrepresented.
The 97% is something that Esther Crawley tells her patients but that is Bath and not London and Ms Dorries refers to a London hospital.
 

sarah darwins

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She now says that she is done with this question and refuses to be drawn any further on the subject of ME, owing to the "aggressive" nature of the comments that she has received.

I did not see a single "aggressive" post, just a handful of ME sufferers unhappy that they have once again been misrepresented.
This does seem to be the conventional wisdom, doesn't it — Everyone knows these ME people are really aggressive if you say something they don't like. I've seen newspaper articles where the writer began by saying "I know the ME lobby will crucify me for saying this ..."

It rules out meaningful discussion before any has a chance to begin.
 
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She was asked where she had obtained the statistic that 97% of ME sufferers eventually recover. She replied that it came from a very trustworthy and reliable source, the parents of a child with ME in her constituency. They had apparently been told this 'fact' by the consultant treating their child.
I've heard that from a GET. I suspect it's part of the "treatment"
 
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I thought it was generally excellent coverage. They definitely presented it as a physical disease and one that is underfunded and not properly recognised as disabling. It would have been nice to shift the focus slightly from patient care to more about research and lack of effective treatments, although care for the most severe patients who are in need of it is essential too (should go without saying).
 

free at last

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Mathew Wright seems genuinely wanting to help. But uncertain about the full extent of the illness. He strikes me like he knows someone close with the condition, and wants fair play. Just a observation, for what its worth.
I like him, he seems very sincere, and interested in helping. Its good to have people in the media on side. I wonder if he could be contacted in some way. And thanked for hes interest, and understanding and support. Perhaps with a little info, about Dr Lipkins new study. and the name change. Maybe in the future they will talk more about this ?
As for Nadine Dorries, I get bad vibes from her full stop. she seems dismissive, like shes not buying any of it.
 

SOC

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She replied that it came from a very trustworthy and reliable source, the parents of a child with ME in her constituency. They had apparently been told this 'fact' by the consultant treating their child.
This politician considers "what some parents reported to me their consultant told them" as a trustworthy and reliable source? o_O That's alarming. Does she base all her political decisions on this kind of so-called evidence?
 

sarah darwins

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Nadine Dories is always loathsome. If she were on our side, I'd switch.
LOL

She's a pure politician (there's an oxymoron). They care — genuinely and with all their heart — just as long as the cameras are rolling. Backstage they turn into giant, alien lizards —it's a well-known fact (I heard it from someone who said a doctor told them).
 

sarah darwins

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Mathew Wright seems genuinely wanting to help. But uncertain about the full extent of the illness. He strikes me like he knows someone close with the condition, and wants fair play. Just a observation, for what its worth.
I like him, he seems very sincere, and interested in helping. Its good to have people in the media on side. I wonder if he could be contacted in some way. And thanked for hes interest, and understanding and support. Perhaps with a little info, about Dr Lipkins new study. and the name change. Maybe in the future they will talk more about this ?
As for Nadine Dorries, I get bad vibes from her full stop. she seems dismissive, like shes not buying any of it.
I got exactly the same vibe from him, and found myself thinking "I bet he knows someone with ME".
Re contacting him, The Wright Stuff does have an email address on its website. I suspect they might actually read emails, as shows like that have a lot of time to fill each week and are always looking for feature ideas. I started writing an email to them, but realised I didn't know who to suggest they should have on the show for a non-establishment perspective. If anyone has any bright ideas ...