The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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UK: The Wright Stuff 19th March - Does M.E. still carry a stigma?

Discussion in 'General ME/CFS News' started by Revel, Mar 18, 2015.

  1. Revel

    Revel Senior Member

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    On 19th March, The Wright Stuff (9.15am) on Channel 5 will be airing the subject of M.E. and whether having this diagnosis still carries the stigma attributed to it from years past.

    It is a phone-in show, but they also accept emails prior to and during the broadcast.
     
  2. Bob

    Bob

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    The Wright Stuff (it's a UK TV chat show) is very sympathetic towards ME/CFS, and portrays it fairly.
    Last time they covered ME/CFS, they placed the recording online afterwards.

    This is their website:
    http://www.channel5.com/shows/the-wright-stuff

    And contact details:
    Join Matthew and his panellists for topical debates every weekday - call us on 020 7173 5555 or email us at wrightstuff@channel5.com
     
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  3. lizzywhizzy

    lizzywhizzy

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    Thanks Bob,didnt realise there was already a thread x
    Will be interesting to hear what is said..in my experience,nothing much has changed in the 19 years ive had it..still astigma,still a lack of empathy from most people.
    I got far more kind words when i fractured my wrist,tho of course i recovered from that in just a few weeks!
     
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  4. Bob

    Bob

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    Someone else told me the same - He did something to his leg, and couldn't walk for a while - And he got heaps of sympathy. It was a complete contrast to the ME, even though he found his leg problem a minor inconvenience compared to the ME.
     
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  5. Bob

    Bob

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    The Wright show did a piece on ME fairly recently, with Sonya Chowdhury, from Action for ME, as a guest. The presenter (Wright) is very sympathetic.
     
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  6. wastwater

    wastwater Senior Member

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    Id like to watch it,hopefully ill be up.
     
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  7. lizzywhizzy

    lizzywhizzy

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    Maybe watch later on catch up wastwater if you miss it x
     
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  8. Revel

    Revel Senior Member

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    Bump. Will be on the 10.20am section of the show. Includes an interview with a pwme.
     
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  9. Scarecrow

    Scarecrow Revolting Peasant

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    Subject is 'is the NHS failing pwME?'.
     
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  10. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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  11. Countrygirl

    Countrygirl Senior Member

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    Just missed it! :(
     
  12. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    So nice to watch something about ME and not cringe to death, ignoring the 97% recovery remark that is o_O
     
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  13. Revel

    Revel Senior Member

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    Dear Nadine Dorries, please :zippit: until you have a better grasp of the facts - thank you.
     
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  14. garcia

    garcia Aristocrat Extraordinaire

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    It wasn't as bad as I was expecting. The choice of patient was good (someone severe for once). I cringed though when he mentioned "emotional" aspects - I think (& hope) he meant cognitive aspects. Luckily apart from that one slip-up he did a really good job. Sonia Choudhry was *ok* though I wish she had had figures to hand when Nadine Dorris mentioned the 97% recovery rate, but at least she refuted that figure. I thought Mathew Wright was really good on the lack of research funding that ME patients get vis-a-vis cancer.
     
  15. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Yeah as soon as the word emotional was mentioned i did wince too, dreading what was to come, luckily it wasn't dwelled on. All round a decent piece.
     
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  16. Scarecrow

    Scarecrow Revolting Peasant

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    I was very impressed with the patient guest and with Sonya. I think it's harsh to criticise Graeme, the patient, for referring to emotional aspects. Nobody would criticise someone with cancer or MS for making a similar comment. Can we all be just a little bit less harsh on ourselves, please?

    The programme had a lot of positives. The biggest problem I had with it was that they didn't stay on topic, 'is the NHS failing patients?' Well, yes it is but that situation won't change too much until effective treatments become available. That's not going happen without drug trials. The NHS isn't going to be able to do very much other than be properly supportive - and honest (sadly lacking in my experience) - until there are effective treatments.
     
  17. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I didn't even think of it as a criticism of Graeme. He did a fantastic job.
     
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  18. Scarecrow

    Scarecrow Revolting Peasant

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    Yes, he did. And it wasn't out of place for him to mention emotional aspects. Likewise, your wince and @garcia's cringe are understandable in the context of the way pwME have been portrayed. But if we must wince - and I admit I braced myself a little bit too - we should be careful about how we voice these reactions.
     
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  19. Revel

    Revel Senior Member

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    I always anticipate the worst, so this wasn't too bad. I thought the ME guest, Graeme, did very well under the pressure of a live studio talk show. He did make a gaffe re the "emotional" aspects of the illness, but as he immediately went on to describe his photosensitivity, he clearly had meant the "neurological" aspects of being oversensitive to certain stimuli.

    I would have preferred that the programme had stuck with the original premise, discussed the day before, of the perceived stigma attached to ME, rather than attempting to cover the vast topic of the NHS failing ME patients.

    I was pleased that the host, Matthew Wright, attempted to draw a distinction between "chronic fatigue" and ME/CFS. What wasn't addressed was that the NHS only provides treatment clinics suitable for chronic fatigue patients and that these are not appropriate for moderate/severe ME/CFS patients. The NHS in most areas of the UK appears to be incapable of telling the two conditions apart and is still relying heavily on a psychological bias.

    ME is not allocated proportional funding for research nor do pwME receive adequate care because we are still struggling to convince large swathes of the population, including members of the medical profession, that we actually are "quite poorly indeed".

    Then, when MP Ms Dorries goes on to spout that as far as she is aware 97% of pwME recover with time, why bother funding anything? Let's just wait until the lazy beggars get bored of doing nothing and venture back to work.

    Not sure whether it's stigma or plain ignorance but this view needs to change and I wish that this had been discussed, instead of the NHS, as was previously planned.
     
    Last edited: Mar 19, 2015
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  20. sarah darwins

    sarah darwins I told you I was ill

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    I didn't see the show, so can't comment on its content, but it might be productive for someone who did and who has a strong grip of the research evidence to write to Nadine Dorries, politely asking where she got the 97% figure from and suggesting she revisit that notion. From the sound of it she does mean well but isn't as well-informed as she might be (presumably getting her information from the usual suspects). She has a blog, and can be contacted at dorriesn@parliament.uk
     
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