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.
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 Tiickett’s letter June 2023 |
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:
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:
Herefordshire and Worcestershire Health and Care NHS Trust In light of the concerns you have raised we have unpublished the job advert and are reviewing it, along With service information on our website. If anyone would like to discuss care they have received, please contact our Patient Advice and Liaison Service (PALS). Details for the PALS team are available on the Trust website: https://www.hacw.nhs.uk/pals
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:
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:
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
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:
- 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.
- 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
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
| Blogs & Information 2023.01.07 to 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
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
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