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NICE CFS/ME guideline update next steps: stakeholder workshop

23/2/2018

 
NICE news article - NICE announces next steps in updating its guideline on ME/CFS.

A workshop last month with stakeholders marked the formal start of NICE’s collaborative work to update its 2010 guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
 
NICE Guideline - ME/CFS : Diagnosis and Management
A New Guideline is in development, with expected publication date: 14 October 2020.  This Guideline will fully update (CG53)

 
Forward-ME members discussed the NICE Guideline when they met on 10 January, a week before the NICE Guideline Stakeholder Engagement workshop.   Forward-ME is a collaboration of ME/CFS charities - chaired by the Countess of Mar.

 
Reports following the workshop:
  • Dr Charles Shepherd, the ME Association’s Medical Adviser summarised the key points;  and the MEA announced the NICE News item - 
  • Sue Waddle, Vice Chair of ME Research UK (MERUK) attended the workshop and gave her comments in the MERUK NICE Guideline Report
  • Action for M.E.’s report on their involvement at the NICE guideline meeting, and further report -
 
 
Information from the Worcestershire NHS CFS/ME Service website:
Worcestershire Health & Care NHS Trust Extract from ‘Family & Friends Area’ -
Treatments for CFS/ME
Nice guidelines (2007) suggest that the most effective treatments are Cognitive Behavioural Therapy (CBT) to help improve the way you feel about the condition, and Graded Exercise Therapy (GET) to gradually build up exercise tolerance and improve fatigue levels. The principles of these therapies underpin the treatment provided by the Worcestershire CFS/ME Service.

SNP MP secures debate on PACE trial - 20 February 2018

12/2/2018

 
On 20th February, MPs will debate ‘The PACE trial and its effect on people with M.E.’

The debate will take place in Westminster Hall at the House of Commons on Tuesday 20th February, from 11.00. to 11.30 am. (If not on BBC Parliament should be on www.parliamentlive.tv).
 
From Carol Monaghan: SNP MP secures debate on controversial DWP-funded ME trial. Commenting ahead of the debate, Carol Monaghan MP said:
“I am pleased to have secured this important debate on 20 February, and would urge anyone who has been affected to get in touch with me.
 
From ME Association: Westminster Hall Debate: The PACE trial and its effect on people with M.E. - A meeting with Carol Monaghan MP | 08 February 2018
What can you do?
You can provide Carol Monaghan with information about your personal experiences of graded exercise therapy, cognitive behavioural therapy, or of how the PACE trial and its media coverage etc. may have affected you or your treatment.
Please contact her by email: [email protected] in advance of the Westminster Hall debate on February 20th.
You can also write or email your local MP to invite him/her to attend the debate, or alert them to it via social media.

Worcestershire CFS/ME Local Multi-Disciplinary Team (LMDT) Service Update - February 2018

7/2/2018

 
Marina Townend has confirmed that the LMDT team, as at the beginning of February 2018 is:

Marina Townend - (part time Specialist Occupational Therapist / Team Leader)
Helen Ayres - (part time Clinical Psychologist)
Sara Young - (part time Occupational Therapist)
Kirsti Barnes - (part time Administrator)
George Hampson (Psychology student, part time)
Lillie Howells (OT student, part time)

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