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BBC Scotland covering ME/CFS on Monday 7th November

JoanDublin

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
I listened to the programme and it was THE best piece of mainstream media I have ever heard about ME. PACE with its Graded Exercise Therapy and CBT got roundly bashed by all callers, several of whom spoke of the harms it had inflicted on them and continues to do so to this day. Well worth listening to it on podcast if its posted. Charles Shepherd spoke very well and very clearly about how NICE guidelines were not fit for purpose. Julie Rehmeyer was also interviewed for it and opened the section with a very good interview. Also anyone who wants to thank Kaye Adams for her professional, unbiased handling of the programme can do so on Twitter @KayeAdams
 
SK2018

SK2018

SK
Messages
239
Location
Asia wide + UK
charles shepherd said:
From the MEA NHS Services Directory:

NHS SPECIALIST SERVICES IN SCOTLAND

We want to build up a picture of specialist NHS services for adults and children with ME in Scotland. If you know of any good services, please let us know. If you have any tried any services, your feedback will be most welcome. Email here.

We’ll publish the detail as it comes in.

Astley Ainslie Hospital
Department of Clinical Psychology, Astley Ainslie Hospital, 133 Grange Loan, Edinburgh EH9 2HL. Open only on Thursdays and Fridays. Tel: 0131 537 9139.
This is a Lothian-wide service for patients with a diagnosis of ME/CFS, who are well enough to attend the service. The service was set up as a two-year pilot starting in November 2012 but has since been granted a year’s extension to run until the end of November 2015. It is based in the hospital’s pain management service and is run by specialist physiotherapy and applied psychology staff.

Glasgow
NHS Centre for Integrative Care, 1053 Great Western Road, Glasgow G12 0XQ, Tel: 0141 211 1600.
Clinical lead: Dr David Reilly

Fife
Scotland’s only specialist nurse-led service for patients with ME/CFS is at the LadyBank Clinic, Commercial Road, Ladybank, Fife KY15 7JS, tel: 01337 832 123, email: keithanderson1@nhs.net It is run by Keith Anderson, a qualified psychotherapist and CBT therapist. Mr Anderson recently gave a talk to Edinburgh ME Self Help Group; to download a short report of this talk, please click HERE.

Stornaway, Western Isles
A Fatigue Management Programme was opened in May 2011 at the Western Isles Hospital in Stornoway to help people with fatigue to explore the reasons for the fatigue and equip them with the techniques to manage the problem better. A video link to Uist and Barra Hospital may be set up, if there is a demand for it. The Western Isles, with a population of about 26,000 people, has no specialist ME/CFS service. To inquire about joining the programme, please contact Elaine Smith, Occupational Therapy Department, tel: 01851 708287, or email elaine.smith1@nhs.net who will send you an application form.

That's it as far as hospital based services for a part of the UK with a population of around 5.400,000 - with no specialists referral service for children and adolescents at all…


Complete MEA NHS services directory for the whole of the UK: http://www.meassociation.org.uk/spe...uk-this-page-last-updated-on-27-october-2016/
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"Clinical psychologists" ,CBT ,psychotherapists what a load of codswallop ,ME CFS patients need good Neuro immunologists working together with infectious disease specialists you can't "TALK" an ME patient to get better ,the NHS is a disgrace no wonder I went to a foreign country to get proper treatment"
 
SK2018

SK2018

SK
Messages
239
Location
Asia wide + UK
JoanDublin said:
I listened to the programme and it was THE best piece of mainstream media I have ever heard about ME. PACE with its Graded Exercise Therapy and CBT got roundly bashed by all callers, several of whom spoke of the harms it had inflicted on them and continues to do so to this day. Well worth listening to it on podcast if its posted. Charles Shepherd spoke very well and very clearly about how NICE guidelines were not fit for purpose. Julie Rehmeyer was also interviewed for it and opened the section with a very good interview. Also anyone who wants to thank Kaye Adams for her professional, unbiased handling of the programme can do so on Twitter @KayeAdams
Click to expand...

Aha well CBT is cheaper than Rituximab ,IVIG and plasmapheresis ,that's the real reason ,ME sufferers were sold out a long time ago
 
C

charles shepherd

Senior Member
Messages
2,239
JoanDublin said:
I listened to the programme and it was THE best piece of mainstream media I have ever heard about ME. PACE with its Graded Exercise Therapy and CBT got roundly bashed by all callers, several of whom spoke of the harms it had inflicted on them and continues to do so to this day. Well worth listening to it on podcast if its posted. Charles Shepherd spoke very well and very clearly about how NICE guidelines were not fit for purpose. Julie Rehmeyer was also interviewed for it and opened the section with a very good interview. Also anyone who wants to thank Kaye Adams for her professional, unbiased handling of the programme can do so on Twitter @KayeAdams
Click to expand...

Thanks!

And Yes - I think it would be great if people could express their thanks to the BBC for broadcasting a sympathetic item on ME/CFS for a full hour this morning.
Like · Reply · Just now
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
charles shepherd said:
The BBC had so many questions and comments pouring in this morning, especially about the PACE trial - so they decided to extend the ME/CFS discussion from 30 minutes (as was originally planned) to a full hour

And I think there were some very loud and clear messages on the BBC this morning about both the PACE trial and the NICE guideline on ME/CFS!
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Very well done Charles. Many thanks. Also to Julie Rehmeyer, and indeed to Kay Adams.

Do you think it would be easier to get the Scottish Good Practice Guidelines revisited, than the NICE guidelines? If so, then it might set a good precedent.
 
C

charles shepherd

Senior Member
Messages
2,239
Shawn said:
"Clinical psychologists" ,CBT ,psychotherapists what a load of codswallop ,ME CFS patients need good Neuro immunologists working together with infectious disease specialists you can't "TALK" an ME patient to get better ,the NHS is a disgrace no wonder I went to a foreign country to get proper treatment"
Click to expand...

As I said on the BBC programme this morning, this MEA website list is the best that Scotland can offer and it's just not good enough

People in Scotland require a proper network of multidisciplinary services that are PHYSICIAN LED, can provide proper investigation and an accurate diagnosis, and appropriate advice on management that is not based on the seriously flawed PACE/psychosocial model of causation and management
 
C

charles shepherd

Senior Member
Messages
2,239
Barry53 said:
Very well done Charles. Many thanks. Also to Julie Rehmeyer, and indeed to Kay Adams.

Do you think it would be easier to get the Scottish Good Practice Guidelines revisited, than the NICE guidelines? If so, then it might set a good precedent.
Click to expand...

Yes, I do think it might be easier to get an update of the SGPS

But this is really a conversation to have with Dr Gregor Purdie

And I think there needs to be political pressure at Holyrood applied as well
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
C

charles shepherd

Senior Member
Messages
2,239
Barry53 said:
Done.

The generic email address is radiofeedback@bbc.co.uk, so worth clarifying the Radio Scotland bit, as well obviously which programme.
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Thanks Barry

It really would be great if people could express their thanks to Kaye Adams and the BBC for broadcasting a very sympathetic item on ME/CFS for a full hour this morning. This is a subject that the BBC will return to if they feel that they are doing something right for a change when it comes to reporting on ME/CFS!
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
charles shepherd said:
Thanks Barry

It really would be great if people could express their thanks to Kaye Adams and the BBC for broadcasting a very sympathetic item on ME/CFS for a full hour this morning. This is a subject that the BBC will return to if they feel that they are doing something right for a change when it comes to reporting on ME/CFS!
Click to expand...
Just felt it worth emphasising that, as Charles points out, praise where it is due can be hugely beneficial.
 
U

UKmum

Messages
87
charles shepherd said:
Thanks Barry

It really would be great if people could express their thanks to Kaye Adams and the BBC for broadcasting a very sympathetic item on ME/CFS for a full hour this morning. This is a subject that the BBC will return to if they feel that they are doing something right for a change when it comes to reporting on ME/CFS!
Click to expand...

Done- everywhere I can think of inc facebook page for Kaye Adams & Nadia
 
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