BBC Radio Scotland covers ME/CFS

[charles shepherd]

BBC Radio Scotland - The Kaye Adams Programme, 07/09/2016

The Kaye Adams programme followed up the feature in the Daily Telegraph from Hannah Radenkova with a wide ranging discussion on ME/CFS this morning

I took part from the main BBC studio in London

The segment on ME/CFS was originally planned to take about 20 minutes but it lasted for almost an hour as the studio was getting so many calls and emails

The programme is still available on the BBC iplayer and will be for the next 30 days

It starts at 2 hours 6 minutes on the iplayer recording:

http://www.bbc.co.uk/programmes/b07qg455

Overall, it was a good programme that managed to put across a lot of information as to why some doctors still regard ME/CFS with scepticism or view it as psychological, the physical vs psychological debate and why some people with ME/CFS get depressed, core symptoms and diagnosis, management - including CBT and GET, specialist referral services, the APPG report on social care and current research priorities - including the new metabolomic study

And as there was so much interest BBC Scotland are wanting to return to this subject at a later date.....

Daily Telegraph feature that prompted this BBC coverage:

http://www.meassociation.org.uk/201...e-syndrome-telegraph-online-5-september-2016/

Dr Charles Shepherd
Hon Medical Adviser - MEA

 

[charles shepherd]

More info here on the MEA website:

http://www.meassociation.org.uk/201...-scotland-show-this-morning-7-september-2016/

 

[charles shepherd]

In relation to the appalling lack of hospital based referral services for people with ME/CFS in Scotland there were several comments during the phone in part of the programme about the ME/CFS service at the Astley Ainslie Hospital in Edinburgh

From the MEA website directory of hospital based NHS referral services

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.

South of Tyne and Wear
Department of Paediatrics, City Hospitals Sunderland NHS Foundation Trust, Kayll Road, Sunderland SR4 7TP, Tel: 0191 5656256 x 42899 Fax: 0191 5699219 Email:neil.hopper@chsft.nhs.uk
Clinical lead: Dr Neil Hopper, consultant paediatrician. We see which sees children and young people up to the age of 18 with CFS. We cover Sunderland, South Tyneside and Gateshead and comprise two paediatricians, one paediatric physio and one psychologist.

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.netIt 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 clickHERE.

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 emailelaine.smith1@nhs.net who will send you an application form.

 

[charles shepherd]

This is the MEA leaflet on Early and Accurate Diagnosis that I spoke about on this BBC programme:.

Free download from the MEA website online shop:

http://www.meassociation.org.uk/.../the-importance-of.../

 

[bobp1970]

Isn't it fair to say there is no specialist ME service in the UK fullstop?

I live in the SE of England and my specialist service involved me waiting a year to be sent to a doctor who listened to me for 30mins and then said yes, you have ME. That was it unless I wanted to do GET or CBT. Nothing else.

I felt the NHS and NICE got off really lightly on the show. They should have been taken to the cleaners.

 

[sarah darwins]

sn't it fair to say there is no specialist ME service in the UK fullstop?

I live in the SE of England and my specialist service involved me waiting a year to be sent to a doctor who listened to me for 30mins and then said yes, you have ME. That was it unless I wanted to do GET or CBT. Nothing else.

I think that is fair to say. The regional CFS Centres are basically distribution warehouses for CBT/GET, except for a few blessed exceptions (my local Centre is one) where they've never accepted CBT/GET as valid treatments. But such is the top-down nature of healthcare in the UK that even though no one at Cornwall CFS Centre believes in CBT/GET, it's almost impossible for them to offer any meaningful treatment, only advice on pacing, diet etc for those who know nothing about their illness.

With today's news, this may be about to start changing. Can't come too soon.

 

[eafw]

It starts at 2 hours 6 minutes on the iplayer recording:

Thanks for all your work on this Charles. To note for people who have some sort of smart device, as an alternative to the weblink, the BBC iplayer radio app has BBC Scotland and is easy to use for catch-up as well as live progs. Am listening to it now