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The ME Show - series two

Discussion in 'General ME/CFS News' started by Gary Burgess, Jan 28, 2019.

  1. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Oh yes, please have a go! Have you software to do this?

    I ask as Russell F kindly did a transcript for my interview with the BBC on NICE etc. i now need to nail Waveney CCG Director of Commissioning at a Joint Scrutiny meeting, with a verbatim account of her admitting their faults and transgressions.......!
     
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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    no. I downloaded some free transcribing software and tried it using the Microsoft Voice recognition software and it comes out as gibberish. So, I have to do it the old-fashioned way, listen and type.
    very time/energy consuming; hence no promises.
     
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  3. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I used Google translate to send letter to my Polish friend, She is still laughing at it!
     
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  4. Gary Burgess

    Gary Burgess Established Member (Voting Rights)

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    Morning all. Episode four of The ME Show is out today.

    I speak to Dr Nigel Speight, a GP who fights the corner of families caught up in agregious child protection cases. Their child has ME. The authorities actually claim they’re being abused or neglected by their parents.

    Search for ‘The ME Show’ in iTunes (and please subscribe) or stream online at www.meassociation.org.uk/themeshow
     
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  5. Trish

    Trish Moderator Staff Member

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    A very good interview as always, but such a sad and depressing episode, with Dr Speight still seeing so many cases of children and families subject to child care proceedings, so many doctors believing ME is psychological and so many patients, adults and children, with severe ME getting no medical care at all.
     
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  6. Peter

    Peter Senior Member (Voting Rights)

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    Quiet a dark episode with N. Speight, describing cases of children, the snakes and ladders. One step ahead and two back. That is exactly how it is experienced. Some things are moving in the right direction, but facing extreme resistance. More progress, more resistance in way of actually gain knowledge and spend money wisely.

    Nice, Gary. Appreciate the time of 15-20 min.
     
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  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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    A dark episode in medical history, according to dr. Speight. So true.
    Thanks for yet another very interesting episode, @Gary Burgess
    I really enjoy your podcast!
     
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  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I've done a transcript (a couple of bits I couldn't make out)
    @Gary Burgess @Russell Fleming
     

    Attached Files:

    Last edited: Feb 19, 2019
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  9. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Thank you @Gary Burgess

    For your best interview yet

    It's easy for people to get caught up in the excitement of the new developments and things like the NICE Guideline review and forget that we are still very much in the bleak, dark time of this disease.

    Dr Speight says he thought things would change with the CMO report and he's been waiting 20 years. He also talks about how things appear to change and then the Psych lobby rears up again to fight some more.

    I've had ME for over 30 years and here I am, still stuck at home and my life in tatters.

    It's not "gloomy" to admit how bad things are for us especially the long term survivors and the very vulnerable like children.
     
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  10. Trish

    Trish Moderator Staff Member

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    Gary asked me to post this today, as he's away on holiday. The next episode is available:

    Episode Five - Mon 25 February

    Gary Burgess speaks to Sue Pemberton, an occupational therapist who runs the Yorkshire Fatigue Clinic. She has a deep understanding of ME through many years of working with people from mild to moderate through to severe forms of the illness.

    The link is www.meassociation.org.uk/themeshow

    or in iTunes at https://itunes.apple.com/gb/podcast/the-me-show/id1374903449?mt=2
     
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  11. Snowflake

    Snowflake Senior Member (Voting Rights)

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    Thank you @Gary Burgess for your excellent podcasts! I’ve been enjoying catching up on all episodes of The ME Show from both series 1 and 2. As others have said, you have a fantastic interview style and you’ve had lots of fascinating guests on the show.

    I suspect that your latest podcast (episode 5 with Sue Pemberton) might spark a bit debate and may be your most controversial interview yet. I’m sorry that I’m too sick right now to explain further but I hope my comment will encourage others to listen and provide their feedback.

    Thank you again Gary for the show and keep up the great work! :thumbup:
     
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  12. Russell Fleming

    Russell Fleming Established Member (Voting Rights)

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    Next week sees Dr Sarah Myhill, and then we have the Countess of Mar, followed by Dr Nina Muirhead...
     
  13. Trish

    Trish Moderator Staff Member

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    I've just listened to the Sue Pemberton interview. A few notes for those unable to listen.

    Sue is an OT who runs a private clinic in Yorkshire with a part time GP and another OT. She is commissioned by the local NHS to see ME patients.
    Her model of ME is that it's a biological illness or group of illnesses and her 'treatment' is about management by stabilising using restorative rest (mind and body resting) and keeping activity low, so not pushing to do more on good days.

    She rejects the deconditioning / GET approach and the exercise avoidance / CBT approaches.

    She uses CBT to help with overcoming guilt about what the patients 'should' be doing, and help people give themselves permission to rest and not keep doing 'just a bit more' on good days. Focus on stabilising, which for most people means doing less.

    Also symptomatic treatment for sleep, digestion, orthostatic intolerance etc.

    She sees patients over months rather than weeks, with time to recover between sessions and to implement changes. She sees severe patients at home and the main thing there is support.

    She recognises her 'treatment' is about management, but some patients do 'recover' sufficiently to return to full time work but still need to be careful, others it's more about stabilising and improving quality of life.

    Her description sounded very like pacing plus symptomatic treatment. She mentioned a couple of times increasing activity, but only in the context of when stabilised and when ready.
     
  14. Snowflake

    Snowflake Senior Member (Voting Rights)

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    The private clinic that Sue Pemberton works at is called the Yorkshire Fatigue Clinic. The clinic uses GET and CBT as treatments for ME/CFS. From their Commissioner Information Sheet linked on their website under the heading “What treatment is available at the Yorkshire Fatigue Clinic?”

    Their information leaflet for patients says that they are a clinical assessment and rehabilitation service for people experiencing persistent fatigue. It explains that they specialise in ME/CFS but that they also see people with fatigue related to other medical disorders.

    The “rehabilitation programme” they use is called The STEP Programme. This is what they say about it on their website:

    My bold.

    http://www.yorkshirefatigueclinic.co.uk/
     
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  15. Trish

    Trish Moderator Staff Member

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    Thanks @Snowflake, I did notice she used the word 'rehabilitation' a couple of times, which worried me, and that she talked about increasing activity, but made it clear that not everyone can do this - and that they take non-ME patients with fatigue as well, and tailor treatment to the individual. I suspect it's not perfect, but it did sound a lot better than PACE style 'treatment'.

    It would be interesting to hear from anyone here who has been to the clinic. I wonder whether they put GET/CBT in their description in order to comply with NICE and therefore get an NHS contract.
     
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  16. Barry

    Barry Senior Member (Voting Rights)

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    Wow ...
     
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  17. Snowflake

    Snowflake Senior Member (Voting Rights)

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    Yes I agree Trish. But however carefully they are applied, graded activity and cbt still have no reliable evidence base as treatments for ME/CFS. So is it right to be endorsing their use in any form? The risk is that we send the wrong message and end up with new NICE guidelines that are no better than the current guidelines. I think we need to take a hard line on this...
     
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  18. Trish

    Trish Moderator Staff Member

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    I agree we need to take a hard line on what goes in the NICE guidelines, and there is no place for CBT of any sort, or programs that involve increasing activity in the ME guideline. There is no evidence that they are effective. As I said, the interview and information about the Yorkshire clinic is not perfect - just a whole lot better than the usual.
     
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  19. Amw66

    Amw66 Senior Member (Voting Rights)

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    Some parents have accessed this service and reports re Sue are good.
    Everything is relative of course, but there seemed to be a focus in rest and operating within limits. Symptomatic treatment also helped those who perhaps had less sympathetic GPs.
     
  20. feeb

    feeb Established Member

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    @Sly Saint I just want to say that I really, really appreciate all the transcripts you do. I'm deaf and as you can imagine, that makes podcasts and videos without captions impossible for me to access. I often see your name associated with transcripts and I'm so grateful for the work you put in, which must take a lot out of you.

    You may already know this, but if not, you might be interested to hear that Youtube can provide transcripts for videos. If you upload a video and generate automatic captions (correcting for errors, if necessary), then publish the video, you can get access to the transcript from there. It lives in the "..." menu, next to the like/dislike thumbs on a video page. It works even if you publish the video privately, I believe.
     

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