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.

Sir Sajid Javid MP joins Action for ME’s Parliamentary Champions Network.
This week, on Wednesday 1 May, Sir Sajid Javid MP leads a debate on ME/CFS research.
Invite your MP to join this ME/CFS Westminster Hall debate in the Houses of Parliament from 16.30 - 17.30. 
 
Action of ME (AfME) announced: Westminster Hall debate on ME/CFS research
April 26, 2024
We are delighted to announce that Sir Sajid Javid MP will be leading a Westminster Hall debate in the Houses of Parliament on Wednesday 1 May, taking place from 16.30 - 17.30.
 
Ahead of World ME Day on 12 May, this debate provides an opportunity for MPs to share the experiences of people living with ME/CFS and consider what more can be done to improve experiences and outcomes.  As a Government minister must respond to the debate, it is important that as many MPs attend as possible.
 
We have therefore developed a template, which you can download, to send to your local MP, encouraging them to attend the Westminster Hall to represent you at the debate.
If you are able and willing to, we also encourage you to include any additional information about your experiences of ME within the message to your MP.
If you are unsure on who your local MP is, you can use the search function on the parliamentary website to identify them and their contact details.
 
We are very grateful to Sir Sajid for ensuring that the voices of people affected by ME are heard and not lost.
 
Sir Sajid Javid MP joins our Parliamentary Champions Network
We are also pleased to formally announce Sir Sajid Javid MP as our newest Parliamentary Champion!   Sir Sajid is committed to supporting people living with ME and as Secretary of State for Health and Social Care, announced the development of the National Delivery Plan on ME/CFS    . for England.
 
On joining our Parliamentary Champions Network  Parliamentary Champions Network, Sir Sajid says:
 
"ME affects the lives of children & adults across the country. The condition is incredibly disabling with fluctuating symptoms making it difficult to take part in everyday activities.
As Health Secretary, I was committed to ensuring better care & support for people living with ME. I look forward to continuing this work as one of Action for M.E.’s Parliamentary Champions."

•  Action for ME  •  MP   •  Parliament U.K.  •  Research 

Eligibility for the Spring 2024 Covid vaccine booster.
Are people with ME/CFS eligible for a Covid booster vaccine?
The ME Association (MEA) are giving explanations to queries they’ve received.
April 18, 2024
We are starting to receive queries about whether people with ME/CFS are going to be eligible for the Spring Covid vaccine booster - if you decide that you would like to have one.  The eligibility criteria have changed and become more restrictive - so they now only cover two basic groups:
 

• First: everyone over the age of 75 who wants a booster,
  
• Second: people who have immune system suppression - in other words a seriously weakened immune system.
  

While a wide range of immune system abnormalities have been identified in ME/CFS, these are not sufficiently consistent or robust enough to classify ME/CFS as an immununosuppressed medical condition - although there may be individual cases where this definition might be appropriate.
In fact, some of the research evidence in ME/CFS points towards low level immune system activation (in other words an over-active immune system) rather than immunosuppression.
 
ME/CFS is not therefore on the list of named immuno suppressed conditions in the guidance that has just been published by the UK Health Security Agency (UKHSA). The full list of immunosuppressed conditions can be found in tables 3 and 4 in Chapter 14a of the NHS Green Book. 
Consequently, unless you are over the age of 75, it's unlikely that you are going to be offered a Spring Covid booster on the basis of having ME/CFS.
 
Please note that the ME Association is here to provide balanced and accurate information on Covid vaccines – which is what we have been doing since Covid vaccines became available.
We are well aware that some people have suffered an adverse reaction to one of the Covid vaccines and will not want to have another vaccination. On a personal basis, I had a serious reaction to a booster that resulted in vasculitis (blood vessel inflammation).
I am going to carry out some further investigation into eligibility for the Spring booster and will then produce a further summary of the situation.
 
Further Information

• How to book an NHS appointment if you are eligible and want to have the booster.
  
• NHS Green Book – Chapter 14a.
• UKHSA Covid spring booster information | 16 April 2024.

 
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.

•  Coronavirus (COVID 19)  •  M.E. Association

Below is an Invitation to participate in the development of a Clinical Assessment Toolkit for people with ME/CFS, and the Clinical Services.
Stage 3: The ME Activity Questionnaire (MEAQ).
 
Adults in the UK, who have been diagnosed with Myalgic Encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS) are invited to complete an online questionnaire.  This includes people whose ME/CFS was triggered by a Covid infection (i.e. Long Covid). 
 
The aim of the Clinical Assessment Toolkit is to help people with ME/CFS and Clinical Services identify, understand and quantify people’s symptoms and disabilities.  It will also support goal setting, treatment planning, and monitor changes.
 
The work is led by Prof Sarah Tyson (University of Manchester), who has ME herself.  Prof Tyson explains that the aim of this questionnaire is to measure activity levels, and ask about the adaptations people may make to manage symptoms, and/or energy levels.  This is the 3rd stage of a research study to develop a Clinical Assessment Toolkit for ME/CFS.
 
The survey for people with ME/CFS to test out the ME Activity Questionnaire (MEAQ) is now ready for recruitment by following this link -
https://www.qualtrics.manchester.ac.uk/jfe/form/SV_4GBQxvdf3mgdW1E

Patient Reported Outcome Measures (PROMs) in ME/CFS
April 9, 2024
This week, the ME Association's latest announcement on this subject, with a statement from Professor Tyson.
 
 
ME Association funds research for a new clinical assessment toolkit in
NHS ME/CFS specialist services
May 8, 2023
In May last year, the ME Association (MEA) initially announced this research project, with a message from Professor Sarah Tyson, University of Manchester, and a response from Dr Charles Shepherd, Hon. Medical Adviser to the ME Association.

•  Coronavirus (COVID 19) 
•  M.E. Association
•  Post COVID Syndrome (Long COVID) 
•  Research 

Please join us, at our Afternoon Café Meeting on Wednesday, 10 April, 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, Long Covid, 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 will also be on the 2nd Wednesday of each month, from 2.00 - 3.30 pm, at the Next Café.  Further information with all 2024 dates listed is available on our Meetings page.

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