Updated downloadable information from the ME Association (MEA).
 
The ME Association: 2024 Autumn Covid Booster Information
October 21, 2024
 
Even though Covid-19 hasn't gone away, many people have been returning to normal or near normal life.  However, while official statistics indicate that levels of Covid infection are still fairly low this reflects the fact that very little testing is being carried out.  There are new variants of the virus still appearing, hospital admissions remain a cause for concern, and other indicators of Covid in the community confirm that Covid is still causing problems.
 
So, as we have been regularly pointing out on ME Association social media, people still need to take sensible precautions to reduce the risk of catching Covid and should seriously consider having a Covid Autumn booster.
NHS UK website information on all aspects of the autumn Covid booster - including how to book an appointment, different vaccines, common side effects.
 
The MEA continued by giving a link to the NHS Covid-19 vaccine website, plus a detailed letter from -
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS.
 
You can download PDF files of these items.

• Template: Covid Autumn Booster Vaccine (2024)
  
• Template: Flu Vaccine (2024-25)
• Flu Vaccination and ME/CFS (2024-2025)

 
 
 
Updated Booklet: Flu Vaccination & ME/CFS 2024/25
October 11, 2024


Flu vaccination is important because, although flu is often unpleasant, it can be dangerous. This is especially so for anyone with certain chronic health conditions, including ME/CFS. And with Covid still around, a combination of flu and Covid could be even more serious.
As there is no simple yes/no answer as to whether people with ME/CFS should have a flu vaccine, the purpose of this information is to supply you with everything you need to know about flu vaccines and ME/CFS. You and your doctor can then decide whether you ought to have this protection.
 
 
 
The ME Association (MEA) publicised the Guardian’s article at the end of October.
The cost of restricting COVID boosters in the UK could be huge 
October 31, 2024
Britain has closed its eyes to long Covid - which means it will ravage even more lives and livelihoods
Devi Sridhar -The Guardian
 
Extracts
The trauma of those pandemic years is burnt into our minds. But, whether we want to deal with it or not, Covid-19 is still affecting all of us, and circulating at fairly high levels in Britain this month. While community surveys are no longer conducted by the Office for National Statistics to estimate overall cases, hospital data from England indicates that the weekly hospital admission rate for Covid-19 is at 4.64 for every 100,000 people, with the north-east region at 8.91.
 
The longer legacy concerns people who had and cleared the infection, but are still suffering - what is usually referred to as Long Covid.
Recent concerns about economic inactivity are tied to the growing percentage of those unable to function due to Long Covid. A study in the Lancet in August 2021 estimated that 22% of people with long Covid were unable to work, and 45% were on reduced hours.
 
A recent study in the New England Journal of Medicine found that vaccination strongly reduces the chance of serious problems of Long Covid. The study found that the incidence of experiencing symptoms one year after infection decreased during the pandemic from 10.42 cases for every 100 people for unvaccinated individuals in the pre-Delta period, to 3.5 cases a 100 people for vaccinated individuals in the Omicron period. They estimate that roughly 72% of the reduction in Long Covid was due to the vaccines, while 28% was linked to changing variants. 
 
But very few groups in the UK are eligible for a 2024 autumn booster: adults 65 and older; residents in care homes; frontline NHS and social care workers; as well as those in high-risk groups.
The general population can get the Covid-19 vaccine, but it’s pricey, at nearly £100 a dose at Boots, for example. Compare this with the private cost of a flu jab at just under £22.
Looking at other countries’ policies, the UK is the outlier in continuing to restrict free boosters to certain groups. Constrained NHS budget means decisions have to be made on a cost-benefit basis, but avoiding the population-level effects of illness would not only benefit the individual but also the NHS and wider economy.
Read Full Article on The Guardian

•  Coronavirus (COVID 19)  •  M.E. Association  •  National Newspapers  •  N.H.S.  •  N.I.C.E.

The Worcestershire M.E. Social Group’s "Symptoms of M.E./CFS" Information Sheet has been updated, with the "Symptoms for Suspecting ME/CFS" Section of Myalgic Encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management: NICE guideline [NG206], published on 29 October 2021, now included on the reverse.  The updated “Symptoms of M.E./CFS” Information Sheet contains the original first page (with the header and footers updated), plus an extract from the 2021 ME/CFS NICE Guideline overleaf.

The Worcestershire M.E. Support Group produced a ‘Symptoms of M.E./CFS’ information sheet well over twenty years ago, and it continues to be available on our Group’s website in the About M.E. section.  Many people have found this information sheet useful when describing how they feel, and explaining their situations to doctors. 
 
 
The ME Association’s (MEA) website contains symptoms information from the NICE Guideline, including -
 
ME/CFS Symptoms and diagnosis

• ME/CFS and Long Covid Overview
  
• ME/CFS Symptoms & Diagnosis
  
• ME/CFS Further Information
  
• NICE Guideline ME/CFS
  

 
Also the MEA have given Key symptoms with explanations that should all be present for a diagnosis of ME/CFS including -  Debilitating fatigue;  Post-exertional malaise;  Unrefreshing or disturbed sleep;  and Cognitive difficulties.  The MEA website also contains sections on:  Other common symptoms;  Referral to ME/CFS Specialist;  and Severity of ME/CFS.
 
 
Action for M.E. (AfME) explain -
Range of symptoms
Everyone who experiences M.E. has a different pattern of illness, and symptoms and severity can fluctuate and change over time.  M.E. is not "feeling tired."
The 2021 NICE guideline for M.E. for health professionals in England and Wales instead talks about "debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest."
While it’s important to find out more about the range of symptoms experienced by different people with M.E. - it is also important to know that people with M.E. may only experience a few of them and at varying levels of severity.  Always get new symptoms checked by your doctor, as they may be unrelated to M.E. Women often find that symptoms worsen at different times in their menstrual cycle.
 
AfME give detailed explanations on -  Feeling generally unwell;  Sleep disturbance;  Pain - (If pain, especially muscle pain, is more of a problem than fatigue, fibromyalgia may be an issue);  Cognitive difficulties, sometimes collectively called "brain fog";  Problems with the nervous system;  Digestive problems;  Intolerance and increased sensitivity:
 
 
ME Research UK (MERUK) also has a useful section on ‘What is ME?', and explain that ME/CFS is an illness affecting many different parts of the body, which can last for a long time in some people.
 
MERUK give detailed information on -  The main symptoms;  What is the cause?;  Living with ME/CFS;  How is ME/CFS diagnosed?;  What treatments are available?;  The role of ME Research UK;  More information about ME/CFS. 
 
MERUK state - For a more detailed explanation of ME/CFS, its symptoms and treatment, we recommend the website of the US Centers for Disease Control and Prevention.
 
 
BACME (British Association of Clinicians in ME/CFS)
In BACME’s response (pdf) to the 2021 NICE Guidance on ME/CFS, Bacme, stated that the NICE guideline provides information regarding diagnosis including the importance of recognising the key symptom of Post-Exertional Malaise.
 
This response also states that “The symptoms of ME/CFS are not caused by deconditioning. This guideline marks the move away from using GET programmes for treating ME/CFS.  This is a move the majority of BACME members working in NHS specialist services have already made.

•  Action for ME  •  M.E. Association  •  MERUK  •  N.I.C.E.

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

The Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust webpage was updated in January, with information included on our ME/CFS Local Services webpage update blog.      
This is a specialist part-time service that delivers support and treatment to people with ME/CFS within community settings across Herefordshire and Worcestershire.
 
 
At the end of March, we received further information from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services, updating us on the situation at the Herefordshire and Worcestershire NHS ME/CFS Local Services, and responding to our queries.  Marina hopes to be with us at our next Worcestershire M.E. Social Group Afternoon Café Meeting (see end of this blog).
 
 
Changes to the Worcestershire NHS Service, following the revised NICE (The National Institute for Health and Care Excellence) Guidelines, published in October 2021
Marina informed us -
We have gone through the changes in the revised guidelines as a team, and developed an action plan to ensure that we are following them.  Some of these actions are still work in progress as I'm sure you can appreciate that it is time-consuming, and we are already under a huge amount of pressure carrying out our day-to-day work. However, we check in each team meeting to make sure these have not been forgotten and are still progressing.
Actions included changing our language to ME/CFS from CFS/ME (in written format and when speaking), updating our referral protocol and service literature to ensure that they reflect new guidelines, developing a workshop for carers, and compiling a care and support plan.  We are in on-going conversations with our commissioner about medical cover and also regarding how we work with people who are severely affected.
We were not offering CBT or GET as a 'cure' for ME/CFS so our approach to therapy has not changed - we see these interventions as beneficial for some people, at the correct time, and if applied in an appropriate manner. 
 
 
The Current Worcestershire NHS ME/CFS Specialist Services, -
We recently mentioned to Marina -
On the NHS ME/CFS Service webpage, it states - “we work as a multi-disciplinary team with Occupational Therapists, Physiotherapists and Psychologists”.
Marina’s response included -
We have Nikki Mills (Physiotherapist) working in the Post Covid team 1.5 days/week.  She doesn't cover ME/CFS, but will offer guidance and resources to the team at times.  We are very much hoping to recruit a physiotherapist still and are in the process of going to recruitment again.
The PCS service also has access to Carrie Garrett, a Speech and Language Therapist, who offers us approximately 1 session/month.
 
 
Diagnosing Long Covid
Marina informed us -
Diagnosing Long Covid is more straight forward than ME/CFS, and GPs seem to feel more comfortable with this as many people have had a positive Covid test, or recognise the symptoms of the Covid virus.  If other possible causes of on-going symptoms have been ruled out, Long Covid is diagnosed by the GP.
This situation is likely to change, however, as testing is reduced, and new variants have different symptoms which are maybe less recognisable as Covid-19.  We anticipate that there will be more referrals to the ME/CFS service, and hope that the distribution of funding will reflect this.  It is one of the reasons why it has been decided that the PCS service should sit under the umbrella of the ME/CFS service, to allow some flexibility with this.  Referral to the PCS service is mainly via GPs, but other clinicians sometimes refer as well.
 
 
Previous news from Marina Townend is available from our blog last month.
 
 
Next Month
Marina informed us -
I am hoping to come to the Social Group on 10th May.  I look forward to seeing you again and will be very happy to answer any questions then. 


Please join us, when we look forward to greeting Marina at our next Afternoon Café Meeting. This will be held during ME Awareness Week on Wednesday, 10 May, from 2.00 - 3.30 pm, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.
 
Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
 
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 
•  Meetings  •  N.H.S. 
•  N.I.C.E.  •  Post COVID Syndrome (Long COVID)  
•  Worcestershire  •  Worcestershire M.E. Social Group

Invite your MP to join the next meeting of the All Party Parliamentary Group on ME.  Explain your experiences to your MP, especially since the new NICE guideline was published in October 2021.
 
The meeting previously planned to be held in March, was postponed. 
 
The ME Association (MEA) now state  -
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Wednesday 10 May 2023 at 2pm.  In addition to reconstituting the APPG, the AGM will include:

• a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts.
• a discussion of support for those with severe ME
• consideration of our workplan for the coming year.
• Minutes of the AGM will be shared in accordance with APPG rules.

 
We'd be really grateful if you could invite your MP to attend.  Your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.).
Action for M.E. and The ME Association jointly share the secretariat responsibility for the APPG. 
 
A template letter for your use, is also available on the MEA website.
 
 
At the end of April 2022 our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, this is your opportunity to let your MP know?
 
 
The new Myalgic Encephalomyelitis (or Encephalopathy)/ Chronic Fatigue Syndrome: Diagnosis and Management. NICE guideline [NG206] was published in October 2021. 
See 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

•  Action for ME  •  A.P.P.G 
•  M.E. Association  •  MP 
•  N.I.C.E.  •  Parliament U.K. 

Invite your MP to join the next meeting of the All Party Parliamentary Group on ME.  Explain your experiences to your MP, especially since the new NICE guideline was published in October 2021.
 
The ME Association (MEA) give details -
Invite your MP to join the next meeting of the All-Party Parliamentary on M.E
March 8, 2023
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Tuesday 21 March 2023 from 3:30pm-4:30pm. In addition to reconstituting the APPG, the AGM will include:

• a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts.
• a discussion of support for those with severe ME
• consideration of our workplan for the coming year.
• Minutes of the AGM will be shared in accordance with APPG rules.

 
We'd be really grateful if you could invite your MP to attend.  Your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.). 
Action for M.E. and The ME Association jointly share the secretariat responsibility for the APPG. 
 
Template email included by the MEA., for your use.
 
 
At the end of April 2022 our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, this is your opportunity to let your MP know?
 
Plus recent local news:
Worcestershire NHS ME/CFS Local Services News
 
The Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust webpage was updated in January, with information included on our ME/CFS Local Services webpage update blog.
 
Plus, we’ve received further information from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services, updating us on the situation at the Worcestershire NHS ME/CFS Local Services, and responding to our queries.
 
 
The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021. 
See 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


•  Action for ME •  A.P.P.G •  Hereford •  Local News 
•  M.E. Association •  MP •  N.H.S. •  N.I.C.E. 
•  Parliament U.K. •  Worcestershire

 The Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust webpage was updated in January, with information included on our ME/CFS Local Services webpage update blog.      
 
This week, we’ve received further information from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services, updating us on the situation at the Worcestershire NHS ME/CFS Local Services, and responding to our queries.
 
Diagnosing ME/CFS,
Marina informs us -
Unfortunately, we are still unable to confirm a diagnosis of ME/CFS within this service, despite our continued efforts to resolve this situation.  Last year, a service level agreement was made with Birmingham and Solihull Trust whereby the Consultant in their ME/CFS service would assess 50 people within Herefordshire and Worcestershire who have a suspected diagnosis of ME/CFS. Once a diagnosis has been confirmed, we then provide a service to those patients.  This temporary arrangement has worked well but there isn't capacity to continue so we need to find another solution. 
We have been working closely with our commissioner to identify various options, and these are being discussed with GP's and at executive level within the Trust and ICB. I hope a model will be agreed soon and look forward to local people being able to receive a diagnosis (and therefore support and treatment) in a timely way.
In the meantime, GPs continue to refer to this service.  We advise about other options for diagnosis (as detailed on your website) and hold a list of the patients who are in this position.  We have also told people about the (paying) Healthcare service that Action for ME offer, but appreciate this is not an option for everyone. 
 
Action for ME’s "Healthcare Services for M.E." (mentioned by Marina above).
Following our merger with The ME Trust in February 2022, we are now able to offer Healthcare Services alongside our Information and Support, Family Support and Advocacy services.
Click on the menu for more information about each clinical service, including how to refer yourself and details of fees.
Action for ME give details of bursary support on their website.


Covid-19,
Marina informs us -
Since October 2021, the Post Covid Syndrome (PCS) service sits under the umbrella of the ME/CFS service.  Sara Young (OT) has been seconded to the Clinical Lead post, and Helen Ayres (Psychologist) and I both work additional hours to staff the PCS service.  Demand has been very high, and it has been difficult to recruit to the service due to the way that the government provides funding on an annual basis at present. 
 
The Current Worcestershire NHS ME/CFS Specialist Services, -
Marina informed us -
We have recently welcomed Ceri Howell, Therapy Assistant, to the team and she works full-time hours across both services. Mya Krishnan, Clinical Psychologist, also started with us last May, working 2 days/week. 
I am currently covering all the Occupational Therapy input in the ME/CFS service. Unfortunately, the team has been without full admin support for the past 14 months, which has been difficult but will hopefully improve soon.
We continue to offer 1:1 and group interventions, mainly (but not exclusively) on-line as the feedback we have received suggests that this is generally helpful to manage fatigue.  We are starting to get more referrals from Herefordshire GP's now, and still receive a steady stream of referrals for people with the condition who live in Worcestershire.
 
Marina also apologised for the time it has taken her to get back to us.  She explained - - it has been an even busier couple of months as I have had two 3rd year students (OT and Physiotherapy) with me and the team, and new staff members to induct.  All very positive but also time consuming...!
We are still making edits to our website, and any feedback is welcome as we are keen to improve it further, within the corporate constraints of design. I am aware there are various typos and some links that need updating, and I am still liaising with our Comms team about these so hopefully the website will be amended soon. 
I was very sad to hear about Warwick but I'm pleased that you have resumed your meet-ups, and hope to come along to one of these in the next couple of months.  It has been a challenging time for many over the past few years, and support from us all is valued and much needed.
 
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
 
 
Worcester Afternoon Café Meetings
 
Our next Afternoon Café Meeting will be from 2.00 - 3.30 pm, on Wednesday 12 April, 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.)  
 
Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
•  Action for ME  •  Coronavirus (COVID 19)  •  Hereford 
•  Local News  •  Meetings  •  N.H.S.  •  N.I.C.E.  •  Post COVID Syndrome (Long COVID)   •  Worcestershire  •  Worcestershire M.E. Social Group  

APPG Report: Inform your MP about the key issues relating to ME/CFS!.
The ME Association (MEA).  This is the official report from the All Party Parliamentary Group (APPG) on ME that contains key recommendations aimed at increasing research investment and discovery, improving health and social care, and enhancing the lives of people with ME/CFS. It was launched at an official reception with the Rt. Hon. Sajid Javid in May 2022.
 
Last year, the All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME) launched an important report - Rethinking ME- and this highlighted vital recommendations to help people with ME receive good quality health and social care. These included the implementation of the 2021 NICE Clinical Guideline on ME/CFS and creating strategies to transform the approach towards ME in health, welfare, social care, research, and education. 
 
Members of the APPG on ME, the former Health Secretary Sajid Javid, and Nicki Strong (Trustee) of the ME Association attended the report’s launch at the Houses of Parliament in May.  The ME Association understands the importance of this report and we believe it will help to shape the future for people with ME and their families.  
 
The Rethinking ME 37 page report is available to download from the MEA’s website.  Plus also available is a template letter to help you write to your local MP .
 
 
Previous ‘Rethinking ME’ Information
 
Sajid Javid ‘Rethinking ME’ after young relative’s battles
1/6/2022
The Times:  Sajid Javid ‘Rethinking ME’ after young relative’s battles. 
A report by the All-Party Parliamentary Group on Myalgic Encephalomyelitis.
 
"Rethinking ME" at APPG on ME meeting, Wednesday 25 May
19/5/2022
Remind your MP to attend the launch of "Rethinking ME" with Sajid Javid, MP for Bromsgrove, and Health and Social Care Secretary.
 
 
 The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021.  See 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


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The Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust webpage has recently been updated. 
 
Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS).  
We are a specialist part-time service that delivers support and treatment to people with ME/CFS within community settings across Herefordshire and Worcestershire.
 
To contact the service:
Address: Malvern Community Hospital 185 Worcester Road, Malvern, WR14 1EX
Reception phone number: 01684 612671 (an answerphone is available).
Email: [email protected]

This local NHS ME/CFS webpage includes sections on -
About the service
How to refer into the service
What we do
General information
Links and Resources
Following Discharge (includes - Recovery And Management (RaM) group)
Support for families and carers
Carers’ Assessment
 
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

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New BDA Food Fact Sheet: Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome (ME/CFS)
 
Can diet help with ME/CFS?
Your diet should be assessed by your healthcare professional when you are diagnosed.  They will determine if you would benefit from a referral to a dietitian.
 
Seeing a dietitian
Your GP should refer you to a dietitian with a special interest in ME/CFS if you are:

• Losing or gaining weight unintentionally
• Following a restrictive diet
• Living with severe or very severe ME/CFS

 
This British Dietetics Association food fact sheet for ME patients is based on the 2021 NICE (National Institute for Health and Care Excellence) guidelines.
 
The BDA Food Fact Sheet: ME/CFS webpage has a link to their downloadable fact sheet.

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