Please see the update to the blog post- the ME Association #CountMEin Survey closes at 1pm on 31 July.

•  M.E. Association

The ME Association #CountMEin Survey for everyone who might have symptoms or a diagnosis of ME/CFS and/or Long Covid in the UK,,Channel Islands, and the Isle of Man,
 
‘Count ME In’ - M.E. charity calls for an end to NHS neglect!
The campaign will run during 2023 and the ME Association’s (MEA) will share the survey outcomes which will be produced in December.
 
The MEA Reminder -
 
Count Me In Campaign Survey
More than 6000 people with either symptoms or a diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or Long Covid have already completed our Count Me In survey.
Help the ME Association create a true picture of life in the UK, so you can get the support you need.
Complete our survey and tell us how ME/CFS and Long Covid affects people like you.
 
 
For further information, see our previous blog.
ME Association #CountMEin survey & campaign

•  M.E. Association

Letters from Worcester MP and NHS H&W.  Plus, NHS H&W Advert.
 The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust Service.  This is a specialist part-time service that now delivers support and treatment to people with ME/CFS within community settings across Herefordshire and Worcestershire. 
 
Letters from Worcester MP and NHS H&W
At the end of June we received a letter from Robin Walker MP for Worcester, who had been in touch with NHS Herefordshire & Worcestershire (NHS H&W) on our Group’s behalf, regarding concerns about the decommissioning of the local ME/CFS diagnosis service.  The response from Simon Trickett, Chief Executive of NHS Herefordshire and Worcestershire ICB, explained the current situation with the diagnostic pathway for patients with suspected ME/CFS.

Simon Trickett advised that the service has not been decommissioned by NHS Herefordshire and Worcester, but the CFS service is under considerable pressure due to recruitment difficulties.  He pointed out that this is having a significant impact on Herefordshire and Worcestershire Health and Care Trust’s (HWHCT) ability to safely deliver the service to its patients, and unfortunately the service can only accept patients who have been officially diagnosed with ME/CFS at present.
 
The letters from Robin Walker MP, and Simon Trickett, both refer to a suggested alternative pathway for people who are experiencing ME/CFS pain - the Specialist Pain Management Programme.
 
 
Plus, NHS H&W Advert. (from MEA website)
The ME Association (MEA), raised concerns,
Herefordshire and Worcestershire ME/CFS Service - Feedback Required.
July 10, 2023
Concerns are, not surprisingly, being raised with us about a job advert for this service and some of the information on the cause of ME/CFS on the website for this service:
More information on the Herefordshire and Worcestershire ME/CFS Service
BMJ job advert


ME Association Comment
Dr Charles Shepherd , Trustee and Hon. Medical Adviser
Concerns include:
In particular, is the use of the term ‘incremental pacing' - as this is not a term that is used in the new NICE Guideline on ME/CFS.
The new NICE Guideline makes it clear that incremental increased in activity, along with graded exercise therapy, are no longer recommended (in section 1.11.14 – Box 4).
The development of ‘psycho-educational interventions' for both patients and carers is also concerning as it is not clear what this means.
Service website
It is very disappointing to find in the various information leaflets that some of the main (but unproven) causes of ME/CFS are listed as:
Personality
Childhood trauma
Beliefs and attitudes
Excessive rest
Mood disorders
However, there is no mention of any biomedical abnormalities involving the brain, muscle, endocrine and immune systems.
Again, this information is not consistent with current thinking on the cause of ME/CFS, or the new NICE guideline on ME/CFS.
 
Feedback required
Before taking this any further with the NHS Trust it would be very helpful to have feedback from anyone who is using/has used this NHS referral service. Please email: [email protected]
 
Update 10.07.23
The Herefordshire and Worcestershire ME/CFS Service responded:

Dr Charles Shepherd has sent the following email:
 
Dear Herefordshire and Worcestershire NHS Trust
Thank you for withdrawing this job advert so quickly and agreeing to review the content of your website information on the causes and management of ME/CFS - hopefully bringing this into line with all the information and recommendations in the new NICE guideline on ME/CFS.
As you will have noted from our social media announcement I was intending to contact you once we had received some feedback from our members on your ME/CFS referral service.
Whilst there has been some positive comments on our Facebook page coverage there are several issues of concern that need to be addressed.
 
In particular:

1. Some GPs do not appear to know that this referral service even exists.  This has resulted in some people with ME/CFS being referred to Bath, Bristol or Birmingham for secondary care. And some have not been able to obtain a referral for expert help with either diagnosis or management.
2. The use of various Work Sheets - we know from previous discussion with our members that most people with ME/CFS find these are time-consuming to complete and are not particularly helpful in their management.  This is a view that I would share.

 
The ME Association produces a wide range of information on all aspects of ME/CFS for both patients and doctors.
The following (free to download) publications may be of interest and we would be happy to supply paper copies if required:

• Summary of Key Points from the NICE Guideline
• Diagnosing ME/CFS – The Importance of an Early & Accurate Diagnosis
• Long Covid and ME/CFS – Are they the same condition?
• Activity and Energy Management and Pacing

Our new booklet on pain management will be available shortly.
Kind regards, Dr Charles Shepherd,  Hon Medical Adviser
Member of the NICE guideline committee on ME/CFS
 
 
Worcestershire ME Support Group
(Our Group’s Website Blogs & Information): 2023.01.07 - 2023.04.15

Our Group’s blogs of 15 April, 9 March, and 7 January give information received from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services.  Marina has been updating us on the situation at the Herefordshire and Worcestershire NHS ME/CFS Local Services, and responding to our queries.  Marina’s updates have included “Changes to the Worcestershire NHS Service, following the revised NICE (The National Institute for Health and Care Excellence) Guidelines, published in October 2021”.
 
 
New MEA Booklet:
Pain Management in ME/CFS by Dr Charles Shepherd 
July 14, 2023
 
Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, has written a new booklet on Pain Management in ME/CFS. It can be purchased for £1 from the website shop along with a full range of literature covering other important topics including more detailed information on prescription drugs for pain relief that Dr Shepherd also refers to in this new booklet.
 
Introduction
Although a small but significant minority of people with ME/CFS experience little or no pain during the course of their illness, the majority - probably around 75% - do. When pain occurs, it can do so in several different forms and with varying degrees of severity.
Knowing what causes pain in any condition can obviously be very helpful in the way it is managed. However, in the case of ME/CFS, no significant research has been carried out into the cause. We therefore know very little about why some people with ME/CFS suffer severe and persistent pain and others have low levels of pain or no pain at all.
 
When it comes to pain management, the best we can do right now is to work on the basis that there may be faults in the way in which messages about pain from various parts of the body -  muscle, joints, abdomen, etc - are transmitted up the spinal cord to centres in the brain that control how we respond to pain.
Equally, it’s also possible that the way in which these pain control centres in the brain dampen down pain is also at fault. And this is why, in addition to conventional pain-relieving drugs, doctors sometimes prescribe drugs that normally have other uses but affect chemical transmitter systems in the brain.
Despite pain being such an important part of ME/CFS, this is one symptom that tends to receive very little attention in medical descriptions of the illness.  Consequently, pain is a key symptom that is often not managed very well by health professionals.
 
This MEA article on their website, explains “What sort of pain occurs in ME/CFS?”, plus the “Topics covered in this booklet”
 
 
The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021.
 
See also from our website -
 
NICE ME/CFS: new Guideline (New downloadable Publications).
19/1/2022
 
NICE ME/CFS: new Guideline (Reactions).
25/11/2021
 
NICE ME/CFS: new Guideline now Published
29/10/2021

•  Hereford  •  Local News 
•  M.E. Association  •  MP 
•  N.H.S.  •  N.I.C.E. 
•  Worcestershire 
•  Worcestershire M.E. Social Group

Would You Like Afternoon or Morning Café Meetings, and/or Lunches/Afternoon Gatherings at Garden Centres.?
All people with M.E., CFS, FMS, Long Covid, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings  
 
Our Lunches and Afternoon Meetings ceased during lockdown, and recommenced in March this year, with a few people affected by M.E. and FMS meeting during the afternoon of the 2nd Wednesday of each month, at the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.   
 
The Past (before the pandemic started)-
"We need you, Can You Help” & “The Group and it’s Future".
This letter, an extract from the Support Group’s September 2014 newsletter is from Ian Logan, Chair of the Worcestershire ME Support Group prior to its closure at the end of 2016.  The letter explained the situation at that time when the Support Group was holding meetings in six locations throughout Worcestershire, as well as monthly gatherings at various Garden Centres.
 
With the new Worcestershire M.E. Social Group, the Garden Centre Lunches organised by Warwick Davis who was previously Vice-Chair of the Support Group, continued.  Plus, during the summer months Afternoon Gatherings became available.  Sadly, Warwick passed away in July 2021.
 
Future Meetings.
Future social group teas could continue at the Next Café, or maybe a new venue, possibly at garden centres (etc) in various parts of Worcestershire.  Where would you like to meet, and could you help?  Please discuss this at our afternoon café meetings, or let us know by completing our form. 
Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
 
Meanwhile, future Afternoon Café Meetings for this year will also be on the 2nd Wednesday of each month, at the Next Café.  Watch this website for future announcements.

•  Meetings  •  Worcestershire  •  Worcestershire M.E. Social Group

Please join us, at our Afternoon Café Meeting on Wednesday, 12 July, from 2.00 - 3.30 pm, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.  (There is a lift and escalator in the store, plus plenty of parking, including blue badge spaces near the main entrance.)  
 
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us whenever it suits you.
 
Future Afternoon Café Meetings for this year will also be on the 2nd Wednesday of each month, at the Next Café.  Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
 
The Social Group’s Future -  Future Café Meetings.
Future social group lunches/teas could be held at garden centres (etc) in various parts of Worcestershire - where would you like to meet, and could you help?  Please discuss this at our afternoon café meetings, or let us know by completing our form. 

•  Local News  •  Meetings  •  Worcestershire  •  Worcestershire M.E. Social Group

BE COUNTED. BE HEARD. #CountMEin.  The ME Association #CountMEin Survey for everyone who might have symptoms or a diagnosis of ME/CFS and/or Long Covid in the UK,,Channel Islands, and the Isle of Man,
 
‘Count ME In’ - M.E. charity calls for an end to NHS neglect!
The campaign will run during 2023 and the ME Association’s (MEA) will share the survey outcomes which will be produced in December.
 
Extracts from the MEA’s announcement on May 22nd -
 
In a first-time test of public opinion, Britain’s oldest charity for people with the energy-sapping disease Myalgic Encephalomyelitis will today start asking hundreds of thousands of sufferers whether they’re satisfied with the support they’re getting from the National Health Service. 
Martine Ainsworth-Wells, campaigns director at the ME Association, said:
“We know the picture will be patchy - but we want to hear directly from people with the illness, or from those still without a diagnosis, how well or indeed how badly they think the NHS is performing.” 
Today (Monday, 22nd May), the Buckinghamshire-based charity launches a major survey to find the answers. The survey will be backed by a nationwide social media and digital advertising campaign scheduled to last several months. This attempt to reach huge numbers of patients, many of whom have given up on seeing their doctors because of breakdowns in the doctor-patient relationship, has never been tried before. 
 
COUNT ME IN. LET YOUR VOICE BE HEARD
We are asking people to complete a short survey about their health experiences and the support they have received from the NHS and social care services.
This anonymous survey will help us to:

1. Improve NHS and social care services
2. Raise much-needed awareness
3. Better understand how people's lives are affected
4. Help people find support, learn more about symptoms, obtain an accurate diagnosis and find specialists

 
The MEA’s Survey information -
We understand that you might not have the energy to complete the survey yourself, so please allow your carer, parent or guardian, family member, or friend, to complete it on your behalf.
Thank you for taking the time to complete the survey today for the ME Association.
It will take around 10 minutes, and if you aren't able to complete it all in one go, your progress will automatically save and you can return later for up to 3 days.
This survey is run by One Minute to Midnight, a market research agency, on behalf of the ME Association. All your answers will be treated in complete confidence in accordance with the Market Research Society Code of Conduct and GDPR. We will not be asking you for any personally identifiable information.
 
Completing this survey will enable the ME Association to:

1. Inform more people about ME/CFS and Long Covid, help them obtain an accurate
   diagnosis if needed, and find the right support to improve their life quality.
2. Produce an independent report that will raise awareness and help us improve the
   standard of healthcare by working with the NHS and social care services.

 
 
Further information on the MEA website on June 30, 2023
 
Take the Survey
#CountMEin is a major campaign whose purpose is to reach as many people as we can who think they might be affected by symptoms - or who have a diagnosis - of ME/CFS or Long Covid.  
 
Survey Purpose  

1. To reach as many people as we can in the UK, Channel Islands, and the Isle of Man, who might have symptoms or a diagnosis of ME/CFS and Long Covid.  

1. To gain insight into how these symptoms and diagnoses are affecting people’s lives and how effective the support from the NHS and social care services has been.  

Survey Outcomes  

1. We can help more people learn about and recognise ME/CFS and Long Covid, obtain an accurate diagnosis if they need one, and access the most suitable management advice to help improve life quality.  
   
2. A report will be produced based on the anonymous survey responses that will be used to:  
   

• support continuing efforts to influence others about how people are affected and their ability to access health and social care when needed.  
• help improve health and social care services, work with healthcare providers to effectively implement the NICE Clinical Guideline recommendations, and to recognise the importance of listening to patients and tailoring care accordingly. 

 
Further information on the MEA website. - https://meassociation.org.uk/
 
•  M.E. Association