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


•  A.P.P.G   •  Government U.K.  •  M.E. Association  •  MP 
•  National Newspapers  •  N.I.C.E.
•  Parliament U.K.  •  Research 

(Including - Health and Social Care Secretary, and MP for Bromsgrove, Sajid Javid.)
 
NICE (National Institute for Health and Care Excellence)
NICE outlines steps needed to put ME/CFS guideline into practice
NICE has today, International ME Awareness Day (Thursday, 12 May 2022) published its implementation statement which sets out the practical steps needed to put its recent guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) into …..
 
The British Medical Journal response to the NICE announcement
NICE sets out steps NHS must take to implement ME/CFS guidelines
The National Institute for Health and Care Excellence has issued an unprecedented implementation statement1 setting out the practical steps needed for its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) to be implemented by the NHS. 
Such statements are only issued when a guideline is expected to have a “substantial” impact on NHS resources, and this is thought to be the first. It outlines the additional infrastructure and training that will be needed in both secondary and primary care to ensure that the updated ME/CFS guideline, published in October 2021, can be implemented.  The statement is necessary because the 2021 guideline completely reversed the original 2007 guideline recommendations that people with mild or moderate ME/CFS be treated with cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Instead, the 2021 guideline says …
 
 
On M.E. Awareness Day, 12 May, Action for ME (AfME) announced:.
Transforming lives on World M.E. Day
May 12, 2022
Action for M.E. welcomes the Department of Health and Social Care’s pioneering statement on Myalgic Encephalomyelitis (M.E.) on the first ever World M.E. Day.
 
Ministers set out plans for a new cross-Government delivery plan on M.E. for England, aligning with other devolved nations of the UK. The statement, which was made to Parliament today by Health Minister Lord Kamall, is the first time that Government has made an explicit and dedicated statement on M.E.   It’s been backed by a pledge by Health Secretary Sajid Javid to “drive forward progress” and “improve experiences and outcomes for sufferers”.
 
The Government’s statement to parliament also welcomes the launch of the M.E./CFS Priority Setting Partnership (PSP) report Prioritise ME, which sets out the top ten M.E. research priorities identified entirely by people with M.E., carers and healthcare professionals. This initiative, led by Action for M.E. and facilitated by the James Lind Alliance completed a participatory process to identify the Top 10+ M.E./CFS research priorities to change the M.E./CFS research landscape in the UK and beyond.
Questions that Action for M.E. want addressed include whether there is a genetic element to the M.E., if a single test could be developed and whether existing drugs could be used to treat the condition.  The list of priority research areas, as well as downloadable and audio versions of the project report can be found at on the PSP website.
 
Health and Social Care Secretary Sajid Javid said:
“The UK is a world leader in research and Action for M.E.’s priorities lay out clear next steps in learning more about Myalgic Encephalomyelitis (M.E.). M.E. can be an incredibly disabling condition and not enough is known about it – we must drive forward progress in this area to ensure those living with the condition can be better treated and supported. I am committed to improving the lives of people affected - later this year we will develop a delivery plan to understand how we can improve experiences and outcomes for sufferers.”
 
Welcoming the Department of Health and Social Care’s statement and launching the ten priorities, Sonya Chowdhury, Chief Executive of Action for M.E. said:
“For too long people with M.E. have struggled to get their condition diagnosed, understood and acknowledged. On the the first World M.E. Day, it is fantastic to see that this devastating and disability condition is being explicitly acknowledged by Government as priority. This announcement complements the work undertaken through our Priority Setting Partnership, where people of all ages with M.E. have identified their Top 10 list of priorities that would have most impact on their lives to shape future research.  The report has been a powerful opportunity for the voices and lived experiences of children and adults with M.E. to be heard, and empower them to set the priorities for M.E. research themselves, and we look forward to working with Government on their action plan. Through greater partnership working we hope to able to better understand this debilitating disease, with the aim of finding effective treatments and ultimately a cure.”
 
 
Announcements from the ME Research UK (MERUK)
 
UK Parliament and ME/CFS 13 May 2022
Yesterday’s (12 May 2022) highly welcome statement from the Rt Hon Sajid Javid, Secretary of State for Health and Social Care in which he acknowledged
Firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of ME/CFS.
is not the only parliamentary initiative on ME/CFS at Westminster. On 11th May, MP Carol Monaghan tabled an Early Day Motion for ME Awareness Week
 
Perth turns blue for International ME Awareness Day 2022 13 May 2022
Thanks to Perth and Kinross Council, various landmarks in Perth turned blue for International ME Awareness Day or purple to mark Fibromyalgia Awareness Day on 12th May 2022.
 
ME/CFS Priority Setting Partnership 13 May 2022
The results of the ME/CFS Priority Setting Partnership were announced yesterday (12th May 2022, International ME Awareness Day) as the culmination of a process to “enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of health and care that could be answered by research”.
 
Facilitated by The James Lind Alliance, the JLA method is designed to change the way research funding is granted, and to “raise awareness of research questions which are of direct relevance and potential benefit to patients and the clinicians who treat them”.
These priorities came out of a process which gave a central voice to people with ME/CFS, and theirs are the voices that matter most. ME Research UK is encouraged that the outcome validates and strengthens our single-minded focus on funding relevant and rigorous biomedical research into the disease.
The results of the Priority Setting Partnership provide a useful backdrop as we continue our work and build on our unique position as a pre-eminent funder of ME/CFS research across the world.
 
Top 10 priorities
(We have added links to examples of research that ME Research UK has supported in these areas.)

1. What is the biological mechanism that causes post-exertional malaise (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed) in people with ME/CFS? How is this best treated and managed?
2. Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?
3. How can an accurate and reliable diagnostic test be developed for ME/CFS?
4. Is ME/CFS caused by a faulty immune system? Is ME/CFS an autoimmune condition?
5. Are there different types of ME/CFS linked to different causes and/or how severe it becomes? Do different types of ME/CFS need different treatments and/or have different chances of recovery?
6. Why do some people develop ME/CFS following an infection? Is there a link with long-COVID?
7. What causes the central and peripheral nervous systems (brain, spinal cord and nerves in the body) to malfunction in people with ME/CFS? Could this understanding lead to new treatments?
8. Is there a genetic link to ME/CFS? If yes, how does this affect the risk of ME/CFS in families? Could this lead to new treatments?
9. What causes ME/CFS to become severe?
10. How are mitochondria, responsible for the body’s energy production, affected in ME/CFS? Could this understanding lead to new treatments?

10+. Does poor delivery or use of oxygen within the body cause ME/CFS symptoms? If so, how is this best treated?
 
 
Many of the ME Association’s (MEA) announcements [see MEA website for full details]
 
Important Ministerial Statement on ME/CFS May 12, 2022
A statement has been made by Sajid Javid, the Secretary of State for Health and Social Care, which is copied here and can be read directly from the government site from the link below. [see MEA website].
 
NICE outlines steps needed to put ME/CFS guideline into practice
May 12, 2022
Implementation Statement from The National Institute for Health and Care Excellence
NICE has today, International ME Awareness Day (Thursday, 12 May 2022) published its implementation statement which sets out the practical steps needed to put its recent guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) into practice.
 
Priority Setting Partnership
PSP for ME: Top ME/CFS research priorities identified May 12, 2022
The Top 10+ priorities for research around ME / CFS have been identified.
These priorities have been determined as a result of rigorous work engaging with thousands of people living with myalgic encephalomyelitis, their families and carers, and health professionals working to support these people.
The report is supported by The Rt Hon, Sajid Javid, MP, Secretary of State for Health and Social Care who states:
“I welcome the publication of this Priority Setting Partnership which sets out the Top 10+ research priorities for ME/CFS. The Government recognises that myalgic encephalomyelitis (ME) is an under-researched area and pledges to support research funders and the academic community to respond to this independent report.”
The Rt Hon, Sajid Javid, MP, Secretary of State for Health and Social Care
 
 
The Times: Sajid Javid promises radical action for patients debilitated by ME
May 13, 2022
Sajid Javid has promised a radical new approach to the debilitating illness myalgic encephalomyelitis, making the government a world leader in tackling what he called “an incredibly disabling condition”.  The health secretary marked World ME Day yesterday by telling parliament he was “committed to better care and support for people living with ME and their families”.
Read the full article from The Times: Sajid Javid promises radical action for patients debilitated by ME | 13 May 2022
 
Times article: Relative’s suffering triggered Sajid Javid’s ME crusade
May 14, 2022
 
Times article: My daughter couldn’t be saved but there’s hope for other ME patients May 14, 2022
Tragic news from Sean O’Neill at The Times. The ME …
 
 
Science for ME included Sajid Javid’s statement, plus discussion
UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022
 
The Worcestershire M.E. Social Group’s website gives links to Social Media sites which maybe helpful to many people to discuss situations, or just to look and read other people’s postings.

•  Action for ME  •  •  Government U.K.  •  M.E. Association  •  MERUK  •  MP  •  National Newspapers  •  N.I.C.E. •  Research  •  Worcestershire M.E. Social Group

 See ME Awareness Week news items on M.E./Fibromyalgia Charities websites  - see 'M.E. /C.F.S. Organisations', and 'UK Research Organisations' websites links and become involved where you can.
 
International May 12th Awareness Day
This year, 2022, marks the 30th anniversary of International May 12th Awareness Day. The idea originated with Thomas Michael Hennessy, Jr., the founder of Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases (no longer active). Tom Hennessy was based in the USA but understood that it needed to be an international event; he designated the 12th of May 1992 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).
 
May 12 was chosen as it coincided with the birth date of Florence Nightingale, the celebrated English social reformer and statistician, and the founder of modern nursing. Nightingale became chronically ill in her mid-thirties after returning from the Crimean War; the M.E.-like illness often left her bedridden during the last 50 years of her life. You will find a more detailed account in A Short History of Myalgic Encephalomyelitis.

The ME Association ask you to -
Make a wish and join in ME Awareness Week 2022
May 8, 2022
ME Awareness Week starts tomorrow, Monday 9th May, and continues through to a fantastic finale on Sunday, 15th May. During the week, we will be asking you to make frequent use of the hashtag #JustOneWish.
It's the thirtieth anniversary of the event and – with Long Covid rampant round the world – the number of people being diagnosed with ME/CFS is growing exponentially day-by-day.
There are said to be 1.7m people in the UK alone who, months after being infected, still have symptoms of Long Covid - which in so many respects looks just like ME/CFS.
Please do something to help the ME Association meet the challenge of supporting these ever-growing numbers now and in the years ahead.
It's not too late to organise your own fundraiser to support us during ME Awareness Week. Download this little leaflet (pdf) which has lots of ideas for easy-to-arrange fundraising events.
 
Use the hashtag #JustOneWish whenever you can during the week.
The wish is what we have all been crying out for over the years - safe and effective treatments that make people with ME/CFS better.
With our links into the research community, the ME Association is well placed to generate funds that leverage new and promising biomedical research.
In the run-up to the week, we shall be highlighting lots of exciting fundraising going on all round the UK and putting up reminders about the big job of raising awareness of ME/CFS that still remains to be done.
This is your week. It's also the best time of the year to show that you are proud of your achievements and tell the world you're not yet prepared to be forgotten. Please make use of it.
Tony Britton, Fundraising and PR Manager
tony.britton@meassociation.org.uk Mob: 07946 760 811

Last week, Action for ME launched their new five-year strategy, Shaping our future together. -
Shaping our future together: our call for a national strategy for M.E.
May 05, 2022
As we approach the World ME Day on 12 May, we launch Action for M.E.’s new five-year strategy, Shaping our future together. We also have a simple-text version.  Developed in partnership with people with M.E. of all ages, carers and professionals, it sets out four ambitious outcomes which we believe will help us end the decades of ignorance, injustice and neglect faced by people with M.E.
 
Sonya Chowdhury, CEO, Action for M.E. says:
We are calling for a national strategy for M.E. led by the UK Government with a clear implementation plan and significant investment.  Action for M.E. alongside many from the M.E. community work hard behind the scenes to advocate for people with M.E. at all levels, and we hope that we will soon see a long overdue commitment to end the ignorance, injustice and neglect experienced by children and adults with M.E.  We will not stop until this happens.

Sunday 15 May
ME Research UK (MERUK) are publicising -
Blue Sunday- The Tea Party for M.E.
22 April 2022
Anna Redshaw’s ‘Blue Sunday’ Tea Party For M.E. in aid of various ME charities (including ME Research UK) will be held on Sunday 15th May 2022.
As Anna explains
On Sunday 15th May, people from all over the world will meet up online to chat and leave comments on each other’s posts. While doing so they’ll be enjoying tea and cake (or whatever their delicate digestive systems can manage) and donating what they can to M.E. charities and causes.
We are so often excluded from events because our symptoms can make it so difficult for us to leave the house, let alone spend an hour or two at an event. That’s why the Tea Party For M.E. has always had an online/virtual element running alongside any in-person tea parties.
 
The premise is simple.

• Wear something blue (pyjamas count!)
• Dig out your best cups and saucers
• Bake or buy your favourite cake
• Post a photo of you little tea party set-up to social media
• Invite your family and friends to enjoy tea and cake with you, in person or via video call
• Donate the price you’d pay in a café
• Connect with others online who are doing the same, by commenting on their photos and posts
• Feel a part of the in-person tea party as Anna uploads photos and videos from the event she host every ‘Blue Sunday’.

You can share your photos in the Blue Sunday 2022 Facebook Event or on Twitter and/or Instagram using the hashtags #TeaPartyForME2022 #BlueSunday2022
You can donate to ME Research UK directly via JustGiving.

Our local ME/CFS Service
Last month, we publicised the ME Association’s (MEA) request for news https://worcsmegroup.weebly.com/blog/me-awareness-week-2022-9-15-may about your local M/CFS Specialist Service and/or Long Covid Clinic.
Since then, we announced that the ME/CFS Service at Worcestershire Acute Hospital had been decommissioned.
 
How has this affected you?  Is there anything you would like to share, either on this website, or with the MEA?  Just get in touch 


•  Action for ME  •  Coronavirus (COVID 19)  •  Fundraising 
•  Local News  •  M.E. Association  •  MERUK 
•  N.H.S.  •  Research  •  Worcestershire 
•  Worcestershire M.E. Social Group

Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management.
NICE guideline [NG206] Published: 29 October 2021.
 
This guideline covers Diagnosing and Managing Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome (ME/CFS) in children, young people and adults.  It aims to improve awareness and understanding about ME/CFS and when to suspect it, so that people are diagnosed earlier.  It includes recommendations on diagnosis, assessment and care planning, safeguarding, access to care and managing ME/CFS and its symptoms. 
These recommendations were developed based on evidence reviewed before the COVID-19 pandemic.  We have not reviewed evidence on the effects of COVID-19, so it should not be assumed that these recommendations apply to people diagnosed with post-COVID-19 syndrome.  NICE has produced a guideline on managing the long-term effects of COVID-19.
 
Recommendations.  This guideline includes recommendations on:

• suspecting ME/CFS and diagnosis
• information and support, including advice when ME/CFS is suspected
• assessment and care and support planning
• safeguarding
• access to care and support
• managing ME/CFS
• symptom management
• flare-ups and relapse
• care for people with severe or very severe ME/CFS

 
Also from the National Institute for Health and Care Excellence -
NICE ME/CFS guideline outlines steps for better diagnosis and management
NICE has today (29 October 2021) published its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
28 October 2021
It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men.
The guideline covers every aspect of ME/CFS in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review.
NICE continued by giving statements from -
Paul Chrisp, director of the Centre for Guidelines at NICE, Peter Barry, Consultant Clinical Advisor for NICE and chair of the guideline committee, and Baroness Finlay, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales, Velindre NHS Trust, and vice-chair of the guideline committee.
 
The ME Association’s (MEA) announcement -
The new NICE guideline on ME/CFS is published!
October 29, 2021
NICE have now published the final version of the new guideline.
READ NICE GUIDELINE
Dr Charles Shepherd, who was a member of the committee that prepared the new guideline, comments:
People with ME have had to live with a NICE guideline for almost 15 years that was unfit for purpose - because it recommended treatments that were either ineffective or harmful.
After a very thorough review of all the evidence - from clinical trials, experts and patients - we now have a new guideline that has reversed these recommendations and should be widely welcomed by people with ME
In particular the new guideline…..

• Recognises that ME is serious and complex medical disease
• Emphasises the need for early and accurate diagnosis – preferably within 3 months of the onset of symptoms, which normally follow an acute viral infection, and where there are important overlaps with Long Covid.
• Provides sensible guidance on activity and energy management in order to avoid symptom exacerbation and no longer recommends GET.
• Recognises the special problems faced by children and those with severe ME.

The next challenge involves educating and training all health professionals on how to diagnose and manage ME and setting up a full network of hospital-based referral services where GPs can refer for further help.  We will be issuing more detailed reaction in due course
Charles Shepherd,  Hon Medical Adviser MEA
 
Action for ME’s (AfME) Announcement -
NICE publish guideline 
October 29, 2021
Action for M.E. is delighted, as are the other members of Forward-ME, to see the long-awaited guideline on diagnosing and treating M.E be published by NICE. The publication follows a roundtable meeting held last week where Action for M.E. and other members of Forward-ME discussed the key issues.
Doctors, and people with ME* welcome the new NICE guideline on ME/CFS, which brings major improvements to the diagnosis, management, and support for people with ME.
 
The new guideline sets out a significant change in approach:

• Recommending ‘Energy Management’ techniques to avoid ‘Post-Exertional Malaise’ and exacerbation of symptoms. This approach recommends people with ME plan their physical and cognitive activities to stay within their energy limits, incorporating rest where necessary. This is also known as ‘Pacing’.
• Maintains the use of Cognitive Behavioural Therapy (CBT) only to help people cope with the distress which can accompany a long-term condition, but recognises that CBT cannot cure ME.
• Child safeguarding is significantly improved. Some parents of children with ME have been subjected to inappropriate child protection orders, and threatened with the removal of their children, in the belief that the parents had caused a ‘fabricated or induced illness’.

The recommendations on ‘Energy Management’ will also help people with Long-Covid who experience Post-Exertional Malaise (PEM), many of whom have reported that ‘Graded Exercise Therapy’ worsened their condition, and their symptoms were dismissed as anxiety
This recommendation is a clear break from the past. Previously, people with ME were offered ‘Graded Exercise Therapy’ (GET), based on a hypothesis that they were deconditioned. NICE found the evidence for this to be poor quality, and many people with ME reported that GET caused serious harm.
The new guideline on ME/CFS was due to be published in August, but NICE ‘paused’ the release following intervention from some clinicians. After a round-table with representatives from the ‘Royal Colleges’ and ME charities, NICE is now confident that the guideline can be fully implemented.
“The new NICE guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that future children and adults with ME will not repeat the anguish of the past.” (Sonya Chowdhury, CEO, Action for ME)
“The Guideline should drive better acceptance of ME as serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.” (Dr David Strain, Medical Advisor: Action for ME)
We have compared the 2007 versus the 2021 to share the differences and key points of the new guideline. You can read this comparison here.
NOTES:

• ME/CFS, short for ‘Myalgic Encephalomyelitis’/ ‘Chronic Fatigue Syndrome’, is a chronic disease characterised by long-term, debilitating loss of energy, often accompanied by pain. The defining symptom of ME is ‘Post-Exertional Malaise’, the disproportionate worsening of symptoms after exertion that can last days, months or years.
• People with ME often experience other symptoms such as cognitive dysfunction (known as ‘brain fog’), heart rhythm disorders and neurological effects. People with severe ME can be bed-bound for years, with hyper-sensitivity to light and sound. Some require tube-feeding.
• There is currently no cure for ME, but effective management can reduce symptoms.
• ME charities avoid the phrase ‘Chronic Fatigue Syndrome’ because ‘fatigue’ under-represents the severity of the disease and ignores many of the symptoms.
• Forward-ME represents national ME charities, co-ordinating activity to support people with ME.

 
ME Research UK’s (MERUK) Announcement -
Our response to the updated NICE guideline 
29 October 2021

• Download the new guideline here
• Read NICE’s official press release here
• Read Forward-ME’s response here

 
Today’s publication by NICE of its updated ‘Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management’ clinical guideline marks a significant step in both the acceptance of ME as a physical illness and the recognition of appropriate treatment needs of those affected by the condition.
We broadly welcome this significant update and improvement to the previous 14-year-old document, but it marks only the beginning of the transformation needed for ME to be more fully understood and, ultimately, for a cure to be found.
 
NICE’s recommendations highlight the need for research into diagnostic criteria and tests, as well as health-outcome measures, but these will not be fulfilled without researchers, healthcare professionals and funders working together to understand the causes of the illness and the effects it has on bodily systems.
Research from numerous studies informed the changes to the guideline, but it is clear that further progress depends on increased research and the availability of funding to make this work a reality. This is where ME Research UK stands ready.
Having invested over £2 million in worldwide research to date, with 10 ongoing studies, 2 newly funded projects starting this month and PhD funding available, we have funded more high-quality biomedical research into ME than any other charitable body outside the USA.
To date, the research we have funded has centred around the autonomic nervous system, the immune system, the circulatory system, the brain, genetics and mitochondrial dysfunction – all vital areas of research about the causes of ME. However, these results need to be built upon by those currently working in ME and those in other fields so that more vital breakthroughs can be made.
 
BACME’s announcement -
The new NICE Guideline on ME/CFS was published on 29th October 2021
This is BACME's response to the publication:
BACME welcomes the new NICE Guidance on ME/CFS in the hope that this will support continued progress in improving the quality of life of all people who have the complex illness ME/CFS.  Clinicians working in NHS specialist ME/CFS services strive to provide high quality care and support to people with ME/CFS while recognising that there is still a long way to go with our understanding of the condition and we do not yet have a robust evidence base on which to guide treatments and therapy approaches.
 
The new NICE guideline provides information regarding diagnosis including the importance of recognising the key symptom of Post-Exertional Malaise.  The guideline has also clarified the use of the term Graded Exercise Therapy (GET) and,in a change from the previous guideline, it has now restricted use of the term GET todescribe therapy programmes based on treating deconditioning. 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.  BACME welcomes the fact the new NICE guideline specifies that clinicians from all disciplines delivering care to people with ME/CFS should have specialist knowledge of the condition.
BACME continues to support research which aims to provide further understanding of the underlying pathological processes that generate the symptoms experienced by people with ME/CFS in the hope this will also lead to more refined therapeutic approaches.
BACME recognises the importance of providing confident support to people with ME/CFS now and would like to see increased investment in specialist service provision to ensure equitable access for all people with ME/CFS.
BACME will use the new NICE guideline as a foundation on which to build further clinical guidance on the delivery of care to people with ME/CFS and work to ensure that the patient story is heard and embedded in the future of ME/CFS care.
 
Forward-ME Announcement -
New NICE Guidelines on ME: Forward-ME Statement & Media Support
Oct 29th 2021
NICE Publishes new Guideline on ME/CFS*, driving major improvements in care
Press Statement from Forward-ME, embargoed until publication of NICE guidelines.
Doctors, and people with ME* welcome the new NICE guideline on ME/CFS, which brings major improvements to the diagnosis, management and support for people with ME.
 
The new guideline on ME/CFS sets out a significant change in approach:

• Recommending ‘Energy Management’ techniques to avoid ‘Post-Exertional Malaise’ and exacerbation of symptoms. This approach recommends people with ME plan their physical and cognitive activities to stay within their energy limits, incorporating rest where necessary. This is also known as ‘Pacing’.
• Maintains the use of Cognitive Behavioural Therapy (CBT) only to help people cope with the distress which can accompany a long term condition, but recognises that CBT cannot cure ME.
• Child safeguarding is significantly improved. Some parents of children with ME have been subjected to inappropriate child protection orders, and threatened with the removal of their children, in the belief that the parents had caused a ‘fabricated or induced illness’.

The recommendations on ‘Energy Management’ will also help people with LongCovid who experience Post-Exertional Malaise (PEM), many of whom have reported that ‘Graded Exercise Therapy’ worsened their condition, and their symptoms were dismissed as anxiety.
This recommendation is a clear break from the past. Previously, people with ME were offered ‘Graded Exercise Therapy’ (GET), based on a hypothesis that they were deconditioned. NICE found the evidence for this to be poor quality, and many people with ME reported that GET caused serious harm.
The new guideline on ME/CFS was due to be published in August, but NICE ‘paused’ the release following intervention from some clinicians. After a round-table with representatives from the ‘Royal Colleges’ and ME charities, NICE is now confident that the guideline can be fully implemented.
 
COMMENT:  “The new NICE guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that in the future, children and adults with ME will receive an improved standard of care and support.” (Sonya Chowdhury, CEO, Action for ME)
“We hope and believe the Guideline will provide much needed stimulus for substantial, publicly funded biomedical research into the causes, consequences and treatment of this disease.” (Jonathan Davies, ME Research UK)
“This is a very special day for people with ME – publication of a new evidence-based NICE guideline which confirms that this is a serious and very debilitating medical disease. I welcome the emphasis on early and accurate diagnosis and the need to provide early guidance on symptom management when people are not recovering from a viral infection and a diagnosis of ME is suspected.” (Dr Charles Shepherd, Medical Advisor, ME-Association)
“The Guideline should drive better acceptance of ME as serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.” (Dr David Strain, Medical Advisor: Action for ME)
*NOTES:

• ME/CFS, short for ‘Myalgic Encephalomyelitis’/ ‘Chronic Fatigue Syndrome’, is a chronic disease characterised by long-term, debilitating loss of energy, often accompanied by pain. The defining symptom of ME is ‘Post-Exertional Malaise’, the disproportionate worsening of symptoms after exertion that can last days, months or years.
• People with ME often experience other symptoms such as cognitive dysfunction (known as ‘brain fog’), heart rhythm disorders and neurological effects. People with severe ME can be bed-bound for years, with hyper-sensitivity to light and sound. Some require tube-feeding.
• There is currently no cure for ME, but effective management can reduce symptoms.
• ME charities avoid the phrase ‘Chronic Fatigue Syndrome’ because ‘fatigue’ under-represents the severity of the disease and ignores many of the symptoms.
• Forward-ME represents national ME charities, co-ordinating activity to support people with ME.

 
Two further MERUK articles today
 
Updated NICE guideline: recommendations for research 
29 October 2021 (ME Research UK)
While the updated NICE guideline on ME/CFS is focused on the diagnosis and management of the illness, it acknowledges that there is still much to learn about it, and therefore makes some useful recommendations for research.
 
Top 10 takeaways from the updated NICE guideline
29 October 2021 (ME Research UK)
Today’s publication of the updated NICE guideline on ME/CFS marks a significant step in the acceptance of ME as a physical illness and the recognition of appropriate treatments for people affected by the condition. There are marked changes from the previous version in how people are to be diagnosed and what treatments can be offered. Here are our top ten takeaways from the new guideline.
 
 
Today’s Press:
 
BBC News: Chronic fatigue guidelines scrap ME exercise therapy advice
 
The Guardian | ME / Chronic fatigue syndrome:  ME exercise therapy guidance scrapped by Health watchdog Nice
 
INEWS:  Chronic fatigue syndrome: controversial exercise therapy removed from new treatment guidelines
 
Daily Mail:  Doctors are told NOT to prescribe exercise to patients with ME  - even though critics say it's the only therapy known to help.

•  Action for ME  •  B.B.C.  •  Forward ME  •  #MEAction  
•  M.E. Association  •  MERUK  •  National Newspapers  •  N.I.C.E.  
•  Research

At the APPG on ME (All Parliamentary Group on ME) next week, MPs will be discussing diagnosis and management and the new draft of the NICE (National Institute for Health & Care Excellence) Guideline on ME/CFS CFS. 
 
The NICE Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management guideline is in development, with an expected publication date of 21 April 2021.
The NICE website explains that individuals can comment on the Draft Guidance.  See their website, as this must be done via their comments form, and you need to be a registered stakeholder.  Or, contact the stakeholder organisation that most closely represents your interests and pass your comments to them.  The consultation closes on 22 December 2020 at 5pm. 
 
Become involved in the response to the Draft of the NICE Guideline via national M.E. Charities.  The Worcestershire M.E. Support Group closed at the end of 2016, and the Social Group does not have membership so we are now unable to contact people with a diagnosis of M.E. in Worcestershire.  To give you an idea of the local situation, in 2003/2004 the Worcestershire ME Support Group received members’ helpful and unhelpful responses.  The information is taken from completed membership questionnaires in the year ending August 2004.

Members' helpful and unhelpful responses (pdf).

Recent articles following the publication of the Draft of the NICE Guideline -
 
The ME Association (MEA) gave their NICE Press Statement & Media Coverage of New Clinical Guideline on ME/CFS, including links to media articles, and the MEA’s Initial Reaction -
 “We are very pleased to find that NICE has addressed many of the defects in the current guideline on ME/CFS.
“In particular, we welcome the decision to no longer recommend graded exercise therapy (GET) as a treatment for ME/CFS and the decision to give heightened recognition to the many problems faced by people with severe ME/CFS.
“We do, however, have concerns about some of the diagnostic recommendations.  And there is a need to provide far more information on symptom management that is specific to ME/CFS.
“As NICE is now preparing a rapid guideline on Long COVID, a post viral syndrome that has a number of symptoms that overlap with ME/CFS, we hope that the new ME/CFS guidance on activity and energy management will also be used to help people with Long COVID.
“We will be consulting with our members on the draft and sending in a detailed stakeholder response to NICE in December.”
 
The MEA asked: What do you think about the new NICE Clinical Guideline on ME/CFS?
The MEA explained that the draft of the new NICE clinical guideline on ME/CFS is now available to read as part of the stakeholder consultation, and gave details on how to take part.
Please take your time to read the draft clinical guideline and then pass on your comments - preferably in very short statements with a reference to which part of the guideline you are commenting on.  You can do so by: 

• Completing the MEA Monthly Poll located to the right of the MEA website: What is your overall opinion of the draft NICE guideline on ME/CFS?
• Taking part in the discussions about the draft guideline on MEA Facebook,
• Contacting us by email at: feedback@meassociation.org.uk

 
Action for ME (AfME) announced - Draft NICE guideline for M.E.: have your say.
The National Institute for Health and Care Excellence (NICE) has published its draft guidance on the diagnosis, treatment and management of M.E./CFS.  Updated guidance has been long-awaited by people with M.E., advocates and charities, including Action for M.E., who have campaigned hard for much-needed changes.
We are reviewing the guideline in detail, as a priority. We are hugely encouraged to note the following, so far:

• "Do not offer people with ME/CFS any therapy based on physical activity or exercise as a treatment or cure for ME/CFS [or] any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy.”
• "Only offer cognitive behavioural therapy (CBT) to people with ME/CFS who would like to use it to support them in managing their symptoms of ME/CFS and to reduce the psychological distress associated with having a chronic illness. Do not offer CBT as a treatment or cure for ME/CFS."
• "Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness."

It is essential that the views of people with M.E. continue to shape this consultation and that the final guideline has a patient-led approach to diagnosis and management.  To make sure this happens, we will be:

• Publishing, as soon as possible, short summaries of key chapters so those less able to read long documents have a clear overview of what the draft guideline says
• sharing a survey to gather views on the guidance; we will link to this ASAP on our website and social media, and in InterAction, our membership magazine, for those not online
• using your views, along with data from our Big Survey last year, to inform our response to NICE, by their deadline of Tuesday 22 December.

Huge thanks to those who have contributed to the draft guideline, particularly people with M.E. Please do check back for updates - we will be posting our summaries and survey on our NICE guideline page as they become available.
 
Invest in ME Research issued a press release on 'NICE Draft Updated Guideline on the Diagnosis and Management of Myalgic Encephalomyelitis (ME or ME/CFS)'. Invest in ME Research stated that until the charity is able to examine the full draft guidelines document their comments relate only to the NICE press release.
 
ME Research UK (MERUK), gave a NICE Guideline Update - Press Release.
MERUK explained that the NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS
NICE has today (10 November 2020) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
It covers the identification and assessment of ME/CFS before and after diagnosis, its management, monitoring and review, information, education, and support for people with suspected or diagnosed ME/CFS and their families and carers, as well as information, education and support for health and social care professionals.
 
Last month, on 8 October, the MEA gave a Statement on the NICE clinical guideline for ME/CFS and the NICE guideline for Post/Long Covid-19.
This detailed article included sections on - Explanation of Post/Long Covid-19 and ME/CFS; NICE Clinical Guidelines on ME/CFS and Post/Long Covid-19; and Illness Management
 
Earlier, in August - ME Research UK’s article - Forward-ME call to NICE. 
Building upon previous submissions to NICE in connection with NICE’s on-going ME/CFS Guideline review which included the ME Research UK and ME Association-funded patient survey on the efficacy and effects of Graded Exercise Therapy and Cognitive Behavioural Therapy, the Forward-ME Group  have contacted NICE as follows:
As charities supporting people with M.E. we have been actively campaigning for NICE to remove the recommendation of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) in the guideline for M.E./CFS.
Patient surveys conducted by charities and groups including Forward-ME have repeatedly shown the harm that can be caused by these therapies, even when delivered by an M.E. Specialist. While this guideline is under review we are calling for NICE to remove the recommendation and add a health warning stating the risks associated with GET and CBT.
One of the main considerations during the guideline review is the evidence for GET in particular. It is therefore appropriate that they take this action in response to the legitimate questions and concerns that have been raised over its safety and effectiveness.
 
For future updates:  see - UK National ME/CFS/Fibromyalgia Organisations., and M.E. Research Organisations.
 
 
Take care, and stay safe everyone.

•  Action for ME  •  A.P.P.G  •  Coronavirus (COVID 19)  •  Forward ME  •  M.E. Association  •  MERUK  •  MP  •  N.I.C.E. •  Research  •  Worcestershire M.E. Social Group  •  Worcestershire M.E. Support Group 

Encourage your MP to sign Early Day Motion #863 and Early Day Motion #864.

• Post-Covid-19 Support EDM #863.
• Researching and Supporting People with Long Covid-19 symptoms EDM #864.

Worcestershire MPs’ contact information from our website.

"I was infected with coronavirus in March, six months on I’m still unwell.". The ME Association (MEA) highlight a recent Guardian/Observer article.
We’ve got this terrific emphasis at the moment on the idea that younger people will be OK and the main reason they shouldn’t go out is because they might infect their grannies,” said Charles Shepherd, medical adviser to the ME Association which supports people with myalgic encephalomyelitis or chronic fatigue syndrome. The association has seen substantial numbers of long-Covid patients turning to it for support.
“There is a risk that if younger people catch the disease, they may not end up in hospital but they could have an illness that leaves them exhausted with post-Covid syndrome. It’s not going to happen to the majority, but there is a real risk for a significant minority,” Shepherd said.
 
#EDM863 tabled by Carol Monaghan MP
That this House is concerned that many individuals who contracted covid-19 are continuing to be affected by the virus many months after their initial infection; notes that these post-viral symptoms can include: extreme fatigue, dizziness, severe headaches and muscular pain, inability to concentrate and post-exertional malaise; further notes that exercise can amplify these symptoms; recognises that many of these symptoms are familiar to those suffering from post-viral conditions, such as myalgic encephalomyelitis; calls on the Government to make a clear statement that increasing levels of exercise may have adverse long-term health effects for those recovering from covid-19; and urges the Government to make a statement on the financial support that will be made available for people who are currently unable to return to work as a result of post-Covid-19 symptoms.
#EDM 864 tabled by Andrew Gwynne MP
That this House recognises that around 10 per cent of people experience prolonged illness after covid-19 and calls upon the Government to urgently collect and regularly report on the number of those living with long covid by following up on those with confirmed or clinical diagnoses of covid-19; notes that research into the disease should encompass both those who were and were not hospitalised to understand the true scale of the morbidity of the virus; and calls on the Government to swiftly consider and implement measures to support those living with long covid, including offering information and incentives to employers to retain their recovering staff who may or may not have confirmed cases due to limitations in testing, and ensuring that the NHS can support patients in their longer term recovery.
 
Early Day Motion: Researching and supporting people with long Covid-19 symptoms.
Dr Charles Shepherd of the ME Association (MEA) explains that a significant proportion of people with post-Covid have symptoms that are very similar to those seen in post-viral fatigue syndrome that often precedes a diagnosis of ME/CFS.  Some of these people are now being diagnosed with a post-Covid ME/CFS.
Raising this issue in parliament will help to promote research into aspects of post/long-Covid that overlap with ME/CFS. This could lead to a better understanding of how a combination of infection and the resulting immune system response can lead to debilitating activity-induced fatigue, cognitive dysfunction and symptoms caused by dysfunction of the autonomic nervous system.   
These potential research initiatives could also lead to the assessment of new forms of treatment that could be relevant to ME/CFS.
The MEA article includes a suggested template to help with your request to your MP.
 
Action for ME’s article - M.E., long Covid and getting the right support covers -

• Forward ME’s open letter addressing concerns and highlighting best practice with regards to rehabilitation of people with long Covid who are experiencing post-viral fatigue.
• Interview on BBC Points West in June with Sonya Chowdhury, AfME’s Chief Executive.
• British Medical Journal blog - Paul Garner on long haul covid-19 - Don’t try to dominate this virus, accommodate it by Paul Garner, Professor, Liverpool School of Tropical Medicine; Director, Centre for Evidence Synthesis in Global Health.
• Leicester Biomedical Research Centre’s research into the long-term health impacts of Covid-19.
• National Institute of Clinical Excellence (NICE) issued a statement, linked to its guideline for M.E., acknowledging that GET may not be appropriate for treating post-viral fatigue in patients with long Covid.
• EDM template email/letter for Early Day Motion #863 and Early Day Motion #864.

 
For further Coronavirus (Covid-19) information specifically for people affected by ME/CFS see further posts on the blog.
 
Take care, and stay safe everyone.


•  Action for ME  •  Coronavirus (COVID 19)  •  M.E. Association
•  MP  •  National Newspapers •  Parliament U.K.  •  Research

DecodeME Funding announcement gets a big response. We were blown away by the response when we announced funding for the DecodeME study in June. Thousands of people shared and posted on social media, and both The Times (paywall) and the Guardian ran articles.
 
The first DecodeME webinar Q&A
You can watch the full webinar, or view answers to individual questions here.
On 6 July, over 2,000 people joined our live webinar on Zoom and Facebook. Professor Chris Ponting, Dr Eliana Lacerda, Andy Devereux-Cooke and host Sonya Chowdhury answered questions such as “I registered online, what happens next?”, “How are you identifying people to take part?” and “Can those outside the UK take part?”.
 
See the DecodeME website to find out how to Get Involved in DecodeME, and read  the FAQs, The Science plus the news Updates
 
At the end of July, the ME Association’s published an in-depth interview with Chris Ponting, lead investigator for DecodeME
Meet The Scientist: Professor Chris Ponting - DecodeME. Professor Ponting took time out from his busy schedule to talk to the ME Association about the DecodeME study that seeks to understand the causes of M.E. In turn, it could help advance the discovery of effective treatments for M.E. which are so desperately needed.
 
For further background information, including information from Action for ME, The Medical Research Council, the National Institute for Health Research, the ME Association, and press articles go to our group’s previous blog ME/CFS Biomedical Partnership - Genetics Research. , and our January blog -  Biomedical Genetics Research: The ME/CFS Biomedical Partnership.

•  Research 

Become Involved, Including a Free Webinair Q&A on Monday 6 July. 
DecodeME has secured funding for a very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it.
On Monday 6 July at 4pm the DecodeME Management Team is hosting a free webinar Q&A, open to all.  The study should help us understand the disease and ultimately find treatments.  DecodeME is the ME/CFS Biomedical Partnership, a collaboration between researchers and people with ME/CFS, carers and the public.
Join DecodeME to help create the world’s biggest study of the causes of ME/CFS.  To find out more about the study you can read the latest updates, FAQs and explanation of the science.
 
Action for ME (AfME) -
DecodeME gets £3.2 funding for ME/CFS DNA study.
Patients, scientists and advocates are celebrating £3.2m funding for DecodeME, the largest ever ME/CFS DNA study, announced today.
As part of the ME/CFS Biomedical Partnership, Action for M.E. is thrilled that, thanks to funding awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, a ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.  DecodeME will look at samples from 20,000 people with ME/CFS, in the hope that the knowledge discovered will aid development of diagnostic tests and targeted treatments.
 
The Medical Research Council -
The largest genetic study into Myalgic Encephalomyelitis in the UK, led by a partnership of patients and scientists, is launched.
A new study has been funded to analyse samples from 20,000 people with myalgic encephalomyelitis (ME), also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.  The study, ‘DecodeME’, is jointly funded by the MRC and National Institute for Health Research (NIHR) with £3.2 million (£1.8 million MRC, £1.4 million NIHR) and hopes to aid development of diagnostic tests and targeted treatments.
 
National Institute for Health Research -
Largest genetic study into myalgic encephalomyelitis is launched.
A new study has been funded to analyse samples from 20,000 people with myalgic encephalomyelitis (ME) to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.  The study, jointly funded by the National Institute for Health Research and the Medical Research Council with £3.2m (£1.4m NIHR, 1.8m MRC), hopes to aid development of diagnostic tests and targeted treatments.
 
ME Association (MEA) -
Free Leaflet: DecodeME – The Largest Ever Genetics Study! 
Patients, Scientists, and Advocates Celebrate £3.2m Funding for DecodeME, the Largest Ever Genetics Study!
This is a free 2-page leaflet about an exciting new study that we hope will be shared with anyone who has ME/CFS and might be interested in taking part.  Please register your interest now by visiting the DecodeME website. The study will begin in September with recruitment from March 2021.  Full details about the study’s launch, with comment from all involved, are available in the press release from 23rd June 2020.  Please note: Members of the ME Association will receive this free leaflet with the July issue of ME
 
Further AfME article -
"We can make DecodeME a success by working together." 
 
Further MEA articles -
MRC: Largest Genetic Study into ME is Launched! 
The DecodeME Genetics Study: Letters to The Times.
Patients, Scientists, and Advocates Celebrate £3.2m Funding for DecodeME, the Largest Ever ME/CFS DNA study!  Includes, UK Announcements

• The Medical Research Council: The largest genetic study into myalgic encephalomyelitis in the UK, led by a partnership of patients and scientists, is launched
• The Times: Chronic fatigue syndrome: Search for genetic clues by Sean O’Neil
• The Times: Chronic fatigue syndrome: ‘It felt like I’d been in a car crash’ – Case Studies by Sean O’Neil
• The Times: Chronic fatigue syndrome: Debilitating condition that leaves opinion divided by Tom Whipple
• The Guardian: UK to launch world’s largest genetic study into chronic fatigue syndrome by Haroon Siddique

Further information -
From the Independent   - Chronic fatigue syndrome sufferers hope for breakthrough as they fight for recognition.  DecodeME, the world’s biggest genetic research project into CFS, will examine the DNA of 20,000 people frustrated by misunderstandings of their condition.
 
From Australia’s Mirage News  - DecodeME, largest ever DNA study into myalgic encephalomyelitis, awarded £3.2m funding. Despite its high cost to patients, the economy, the NHS and society, very little is known about the causes of ME, also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), including how to treat it effectively.
 
From Health Rising,  - DecodeME – U.K. Funds Largest ME/CFS Study Ever In Attempt to Get at Genetic Roots of the Illness.  Cort Johnson points out  - “Simon McGrath, in his blog “UK spends £3 million on the world’s biggest ME/CFS study“, pointed out that of the two funders of the study, the Medical Research Council (MRC) has only funded a few fairly small biomedical studies in ME/CFS before, and the National Institute of Health Research has never funded any.”
 
For further background, see our January blog -  Biomedical Genetics Research: The ME/CFS Biomedical Partnership.

• The Chronic Illness Inclusion Project (CIIP) Survey.
CIPP - Bridging the chronic illness community and the disability rights movement.  Do you have energy limiting chronic illness (ELCI)?  Are you dealing with health condition(s) that cause symptoms such as physical fatigue, mental fatigue and pain, which significantly restrict your day-to-day activities?

Dr Anna Ruddock, Advisor to the CIIP, says
"We are conducting this survey as part of the Chronic Illness Inclusion Project (CIIP). The CIIP works to build a collective voice for people with chronic illness so that we are better accounted for and included in society. The aim of this survey is to gather evidence for an inquiry by the UK Parliament’s Women and Equalities Committee into the unequal impact of Coronavirus (Covid-19) on people with protected characteristics. The Committee will use this evidence to provide recommendations to the UK government. We want to ensure that the impact of Coronavirus on people with chronic illnesses is taken into account during this process.

It should take no longer than 15 minutes to complete the survey. You can save your answers when you need to rest and return to the survey later. By completing the survey you are contributing to the effort to make the response to Coronavirus more equitable – thank you."

• Chronic Illness during the Coronavirus Covic-19 Pandemic.
This video is popular with people affected by ME.   The comedian, Miranda Hart, says - "If you are bored enough have a listen! I had a few things to share".  The part about chronic illness is mainly from around 10:40 onwards.  ME is specifically mentioned.

Another 'Chamble’ from Miranda Hart - again includes awareness on chronic illness. During this video, Miranda Hart reads, and discusses "Life in Lockdown: What Matters When All Is Lost" written by Naomi Whittingham.  Well worth watching - starts after about 14 minutes.  Naomi is the late Betty Hughes' granddaughter

• Short video to raise awareness of severe ME
In 2015, the late Betty Hughes' grandson Tom Whittingham, created a very moving ME Awareness YouTube video explaining how things are for his sister Naomi who has severe ME, and their whole family.
(From 2015 News)

A very large genetic study into ME/CFS.
The ME/CFS Biomedical Partnership are asking for help.  Sign up on the website, to indicate if you want to hear about the study, and whether you want to take part.  The FAQs page answers many questions, under several topics - Science/Research; Recruitment/Taking Part; Funding; The Partnership; and Public & Patient Involvement.
ME/CFS Biomedical Partnership: Genetics and Biomarkers is a partnership of researchers, people with ME/CFS, carers and the public.

Early in 2020, the partnership will make a grant application to the Medical Research Council and the National Institute for Health Research for a very large genetic study into ME/CFS known as a genome-wide association study.
The project will be led by Prof Chris Ponting at the University of Edinburgh in partnership with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.

The study will analyse DNA from the saliva of 20,000 ME/CFS patients to see whether ME/CFS is partly genetic and if so, what causes it. The study should help us understand the disease and find treatments.

The ME/CFS Biomedical Partnership Patient and Public Involvement (PPI) Steering Group is made up of people representing groups or networks from the ME/CFS community, including Sonya Chowdhury of Action for ME (AfME), Dr Charles Shepherd of the ME Association (MEA), and the Countess of Mar of Forward-ME.

Find out more -
AfME and the MEA both recently gave further explanations, and the MEA January monthly survey asks -  would you be willing to take part in research that will investigate the genetics of M.E.?

Two recent useful explanatory blogs, both with comments and responses -
• Trial By Error: The UK’s Proposed Genetics Study, By David Tuller, DrPH.
• Sign up! Your support could help win funding for a game-changing ME/CFS study, By Simon McGrath.

Further background information can be found from the AfME article “ME/CFS Biomedical Partnership”, plus the Forward-ME six page leaflet “The ME/CFS Biomedical Partnership: Genetics and Biomarkers Genome-wide association study: Questions & Answers”, and the MEA article “ME/CFS Biomedical Partnership PPI Steering Group Update”.