You and Yours

What treatment have you been offered by the NHS for chronic fatigue syndrome and has it worked?

The organisation that decides on NHS treatment - NICE - has ordered a review. It's in response to a campaign by some patients, doctors and MPs.

Around 200,000 people in the UK have chronic fatigue syndrome. Current NHS guidelines recommend exercise and cognitive behavioural therapy.

We'd like to know what treatment you've been offered for chronic fatigue syndrome and if it's worked.

With: Dr Charles Shepherd, Dr Esther Crawley

Extracts from Evesham Observer article dated 22 September 2017 -

“Julianne has also called for more support for ME suffers locally. Currently Isabella has to see a specialist in Bath because there are not any at hospitals in Worcestershire.”

And … … …

“Julianne Dix’s daughter Isabella was diagnosed with Myalgic Encephalomyelitis at the age of just 10 and her life has changed ever since.
Now 16, brave Isabella has had to cope with the debilitating and chronic nausea and tiredness, but also the ‘cruelness’ of those who do not understand the illness.”

The National Institute for Health and Care Excellence (NICE) announced on 20th September 2017 that it is planning a full update of its guideline on the diagnosis and management of CFS/ME.

• ME Association: Breaking News: NICE decides to Fully Update its guideline on ME/CFS!
• Action for M.E.: NICE guidelines on CFS/M.E. to be reviewed
• ME Research UK: NICE CFS/ME guideline to be updated
  
• NICE announcement
  
• NICE Guideline: Clinical guideline [CG53]
  
• The Times: Mutiny by ME sufferers forces a climbdown on exercise treatment | 25 September 2017

The next lunch will be on September Tuesday 26 from 12:30pm at De Beers Garden Centre, Kidderminster. 

Join us for lunch, or a cuppa and a chat.

Please see meetings page for dates and venues.

All people affected by M.E. (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome), PVFS (Post Viral Fatigue Syndrome), and FMS (Fibromyalgia Syndrome), will be welcomed at these get togethers.

Ian Logan, has written a final letter as Chair of the Worcestershire ME Support Group.  The Final Financial Report and Statement of Accounts following closure of the Worcestershire ME Support Group have been produced.

All people affected by M.E. (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome), PVFS (Post Viral Fatigue Syndrome), and FMS (Fibromyalgia Syndrome), are welcomed at all social gatherings.  Please see meetings page for dates and venues.

15,180 people signed the ME Association (MEA) national petition, addressed to Sir Andrew Dillon, Chief Executive, NICE, calling for a complete review of the NICE guideline for ME/CFS.  This included many Worcestershire people who signed, many of whom gave their comments.
The 2007 NICE Clinical Guideline has been checked by NICE for the need for an update and the NICE CFS/ME Guideline Registered Stakeholders were invited to comment on NICE’s surveillance consultation - they were given 14 days, from 10 - 24 July to voice their concerns.

LocalME (an online forum for local ME group contacts across the UK) responded - they had managed to receive an extension until 31 July.  The MEA announced Stakeholder submissions from Action for ME (AfME), Forward-ME, Invest in ME Research, LocalME, the MEA, Tymes Trust, and many more.
 
National Petition -
ME Association petition represents biggest expression of no confidence in a NICE guideline ever recorded | 26 July 2017
www.meassociation.org.uk/2017/07/me-association-petition-represents-biggest-expression-of-no-confidence-in-a-nice-guideline-ever-recorded-26-july-2017/
 
Comments - 
www.meassociation.org.uk/wp-content/uploads/MEA-Petition-Comments-24.07.17-1.pdf
 
NICE surveillance consultation -
www.nice.org.uk/guidance/CG53/documents/surveillance-review-proposal
 
Stakeholder submissions -
www.meassociation.org.uk/2017/07/the-nice-guideline-consultation-uk-stakeholder-submissions-27-july-2017/
 
LocalME -
see attached file below

This is your opportunity to voice your concerns. 

The ME Association has today [10 July] launched a national petition that aims to demonstrate to NICE (National Institute for Health and Care Excellence) that people with CFS/ME are not happy with the current guideline or the way in which the current review is being conducted.
Action for ME are also directing people to the MEA national petition.

Please sign the petition, add your comments if you are able to, and share/forward this blog.

• ME Association Petition: The NICE guideline for CFS/ME is not fit for purpose… | 10 July 2017
• Action for M.E. to NICE: guideline must be reviewed 10 July 10 2017
  

During the summer, Worcestershire ME Social Group Afternoon Teas continue.  Also, the Social Group regularly has group lunches at locations throughout the county.

For an afternoon cuppa and chat - join us between 2.30 pm and 4.00 pm at David’s Nurseries, Worcester, on Thursday 8 June; 
Webbs of Wychbold, Droitwich on Thursday 13 July;  and
St Peters Garden Centre, Norton, Worcester on Thursday, 10 August.

Join us for lunch, or a cuppa and a chat, from 12.30 pm, at Rowberry’s Garden Centre, Lower Chaddesley Corbett on 22 June;  and Barnett Hill Garden Centre on 25 July.  Further dates and full details of venues on our website.

All people affected by M.E. (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome), PVFS (Post Viral Fatigue Syndrome), and FMS (Fibromyalgia Syndrome), will be welcomed at these get togethers. 

This Social Group’s website also gives news, blogs and useful links.

Whole independent re-analysis of the PACE Trial recovery paper -
Now available outside of paywall.

“Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy?  A critical commentary and preliminary re-analysis of the PACE trial” 

Conclusion - “The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.”

Explanatory PACE Trial recovery paper articles
(Pacing, Activity, and Cognitive behavioural therapy, a randomised Evaluation) -
‘How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma’
‘Yet more research shows chronic fatigue syndrome is real. When will health services catch up?’
‘Getting it wrong on Chronic Fatigue Syndrome’
‘Call for retraction of PACE publication’

Our first Afternoon Tea will be Thursday 11 May, during M.E. Awareness Week.  Join us for an afternoon cuppa and chat, on Thursday 11 May, from 2.30 to 4.00 pm, at the Apple Barn Restaurant at Evesham Garden Centre, The Valley, Evesham. 

Help raise awareness during ME Awareness Week (May 8 to 14) by Going Blue in Evesham. 

Lunches continue - please see meetings page for all Summer Teas, and Lunches throughout the year.