The ME Association (MEA) reported -
Parliamentary debate on Long-Covid:  What should be learned from ME/CFS?
The MEA’s announcement details the contribution from Carol Monaghan, MP - who chairs the All-Party Parliamentary Group (APPG) on M.E. - to the debate on Long Covid that was made in the House of Commons.  Hansard Transcript: Long Covid Volume 687: debated on Thursday 14 January 2021
The MEA has a full range of free leaflets relating to Covid-19, Long-Covid and ME/CFS. We have recently included a new leaflet about the Covid vaccine and ME/CFS. Leaflets can be downloaded from the website shop.
 
Action for M.E. publicised the debate -
M.E. referenced in House of Commons Long Covid debate.
A Long Covid debate was held yesterday in the House of Commons during which MPs highlighted M.E. and called for lessons to be learned from the illness when treating Long Covid patients.
We’ve summarised some key points from the debate below:

• Layla Moran MP highlighted that there are an estimated 300,000 people in the UK experiencing Long-Covid. She called for better reporting, more funding for research and recognition by employers and the welfare system.
• Carol Monaghan MP, Chair of the APPG for M.E./CFS, spoke about the similarities Long Covid has with M.E./CFS. She welcomed the caution against graded exercise therapy but noted issues with the National Institute for Health and Care Excellence (NICE) Guideline for Long Covid.
• Andrew Gwynne MP shared his experience of Long Covid and the exhaustion, dizziness and brain fog he experienced. He stated that he had to pace himself with over exertion making his symptoms worse.
• Debbie Abrahams MP said that she was hopeful that we would learn from the mistake made in how we provide care and treat people with M.E./CFS.
• Other MPs highlighted research that suggests 21% of those who get Covid will develop Long Covid. Attention was also given to children developing Long Covid and they called for greater information given to schools.
• Jo Gideon MP explained that the symptom brain fog causes a lack of clarity, inability to focus and poor concentration levels. She stated that some people find getting fresh air and going for walks help to relieve this. Action for M.E. will be writing to Ms Gideon to highlight the dangers of overexertion and that people suffering a post-viral illness must not push himself or herself to do more than they are able.
• Dr Rosena Allin-Khan MP, Shadow Health Minister, paid tribute to online support groups who are campaigning to raise awareness of Long-Covid. She said the symptoms could be severe and debilitating with many unable to return to work. Long-Covid patients are being denied referral and she called on the Government to ensure people do not miss out on the care and support they need.

In responding to the debate, the Health Minister Nadine Dorries MP, said that the Government has a five-point plan to deal with Long Covid. The NICE Guideline, which was published in December, describe common symptoms and the support they should receive. You can read about Action for M.E.’s response to this guideline on our Long Covid page. The Minister also referred to the research undertaken into the condition.
Many people with M.E./CFS will feel a sense of familiarity when reading this summary. They have experienced the injustice and neglect referenced throughout the debate without the recognition or attention that Long Covid is getting. We are pleased that some MPs reflected on the similarities with M.E./CFS and that M.E./CFS is being mentioned in the House of Commons. Nevertheless, without greater care many of those experiencing Long Covid could become even more ill if lessons are not learned from M.E./CFS.
 
Action for M.E. highlights the
NICE rapid response guideline on Long Covid. 
NICE has published its COVID-19 rapid guideline: managing the long-term effects of COVID-19.
Developed jointly by NICE, the Scottish Intercollegiate Guidelines Network and the Royal College of General Practitioners, it “makes recommendations about care in all healthcare settings for adults, children and young people who have new or ongoing symptoms 4 weeks or more after the start of acute COVID-19. It also includes advice on organising services for long COVID.”  Along with other stakeholders, Action for M.E. submitted a written response to the consultation on this guideline, which ran from Friday 23 to Tuesday 27 October. You can read more on our Long Covid page.
We are concerned to see no mention of the likelihood of developing M.E./CFS following Long Covid, despite the fact that there is clear evidence that many people with M.E./CFS developed it following viral infection.  Those who experience M.E./CFS symptoms need specific care and management, such as pacing. If those experiencing post-exertional malaise, a hallmark symptom of M.E./CFS, are treated following this guideline, they may experience a worsening of symptoms.  As this guideline claims to be a living document, we would expect there to be a further consultation and review in due course. Action for M.E. is working with another organisation to ensure patient voices are heard, and will share more about our work on this in the New Year.
 
ME Association slams lack of recognition for ME/CFS in new guideline on Long Covid. MEA stakeholder response to the NICE guideline on the management of Long COVID, which is published today.
It is surprising and disappointing to find that the draft guideline: 
(1) Has no recognition that some of the common underlying clusters of symptoms being reported in people with Long/Post COVID are exactly the same as those found in people with a post viral fatigue syndrome (PVFS) or ME/CFS. 
The key overlapping symptoms include:  activity-induced fatigue;  myalgia;  cognitive dysfunction/’brain fog’;  dysautonomia – involving orthostatic intolerance,  postural orthostatic tachycardia, postural hypotension;  headache;  problems with thermoregulation unrefreshing sleep patterns and post exertional malaise/symptom exacerbation.  
It would be very surprising if this was not the case given the fact that any type of viral infection can trigger a post viral fatigue syndrome and research carried out following previous coronavirus infections has reported that 10% or more of those infected go on to develop a PVFS or an ME/CFS like illness.
(2) Contains almost no information on the pragmatic management of the symptoms that are being commonly reported - activity and energy management in particular.  This is also very surprising when a new draft guidance from NICE on the management of ME/CFS has just been published for stakeholder consultation.  This guidance contains detailed recommendations on the sort of energy and activity management that is applicable to people with a post viral fatigue syndrome (regardless of triggering infection) and ME/CFS in both the pre diagnosis and post diagnosis stages.  
 
There have been many Long Covid media articles, including recently -
 
On 21 January, the Guardian publicised -
We're about to see a wave of long Covid. When will ministers take it seriously?
The NHS must learn from its mistakes with other post-viral conditions such as ME/CFS – more research is vital.
Long Covid is shorthand for a range of conditions. Some scientists divide them into three broad categories, others into four. Of these, one seems to ring a bell. It’s a cluster of symptoms that bear a strong similarity to myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). This is a devastating condition that affects roughly a quarter of a million people in the UK, and is often caused, like long Covid, by viral infection.
Among the common symptoms of ME/CFS are extreme fatigue that is not relieved by rest, and “post-exertional malaise”: even mild physical or mental effort can make patients extremely unwell. Many sufferers are confined to their home or even their bed, with their working life, social life and family life truncated. There is, so far, no diagnostic test and no cure. A study published in the journal Plos One found that, of the 20 conditions it assessed, including lung cancer, stroke, MS and schizophrenia, patients with ME/CFS reported the lowest health-related quality of life.

On 15 January, the Sun reported -
Our kids were left unable to eat or walk by Long Covid and treatment was ‘torture’- but docs don’t know how to help
Doctor's plea for compassion
Paediatrician Dr Nigel Speight is an expert in child Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).  He sees parallels between Long Covid and ME/CFS -  also a post-viral condition which is possibly triggered by the body’s immune response.
Dr Speight said: “For many years, children and adults with ME have been subjected to disbelief by the medical profession.  The same thing might be beginning to happen with Long Covid children.
“The medical profession would be sensible to accept Long Covid as a post-viral, ME-like illness, and treat it open mindedly, believe in it, and be supportive.  Doctors don’t have too much to offer these children in terms of a cure, so the least they can do is support and protect them.”
 
 
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.


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Post Covid-19 Fatigue;  Post/Long Covid-19 Syndromes;  Post-Covid ME/CFS.
Explanations from ME charities plus recent news articles.
 
New Free ME Association (MEA) 24 page Leaflet: The ME Association Guide to Post-Covid Fatigue Syndromes and Post-Covid ME/CFS.
Dr Charles Shepherd, Hon. Medical Adviser, of the MEA writes -
Back in April the ME Association became aware of an increasing number of people who had been ill with COVID-19 and were not improving, even after several weeks.  Almost all had been self-managed at home with an illness that mostly varied from mild to moderate in severity, but did not require hospital admission.  Most had debilitating fatigue, sometimes with continuing COVID-19 symptoms involving the lungs or heart in particular. Some had symptoms that are more consistent with the sort of post-viral fatigue syndromes that may precede ME/CFS.
 
Five months on and we are now in a situation where some people are being given a diagnosis, or a possible diagnosis, of post-COVID-19 ME/CFS.  In April the ME Association published a free guide to post-COVID fatigue and post-COVID fatigue syndromes.  This information has now been fully updated to cover all the developments that have occurred since then.  The ME Association has longstanding experience in the management of post-viral debility, post-viral fatigue syndromes and post-infection ME/CFS.
 
This new and comprehensive leaflet should be of help to people in relation to the management of post-COVID fatigue and some aspects of post-COVID syndromes where they overlap with ME/CFS symptomatology.

• At present, we have no firm indication as to how many people are experiencing persisting ill health following COVID-19. However, if current estimates of around 10% of people who were home managed are accurate, this could translate into around 60,000 people with some form of post-COVID ill health that has persisted beyond a month.
• According to Tim Spector, professor of genetic epidemiology at King’s College London, around 12% of sufferers report symptoms to the Covid Tracker app for longer than 30 days. One in 200 says the effects last for more than 90 days.
• Long-COVID, post-COVID fatigue and post-COVID fatigue syndrome are all being used as diagnostic labels.
• Many have debilitating fatigue as a primary symptom.
• Some have respiratory, heart and other symptoms that are the same, or very similar, to the acute infection – i.e. breathlessness, palpitations, intermittent fevers, loss of taste or smell.
• Others have symptoms that are very similar to those seen in post-viral fatigue syndromes that can follow any infective illness and may precede ME/CFS.
• Some have a combination of post-viral fatigue syndrome symptoms and acute COVID-19 infection symptoms.
• In cases where post-COVID syndrome symptoms have persisted for more than three months, and are consistent with those of ME/CFS, a diagnosis of post-COVID ME/CFS should be considered.

 
Action for M.E. (AfME)’s article - M.E., long Covid and getting the right support. 
 
AfME explain -
Forward ME has published an open letter addressing concerns and highlighting best practice with regards to rehabilitation of people with long Covid who are experiencing post-viral fatigue.
UPDATE An Early Day Motion for debate has now been tabled on this: scroll down for more, including a template you can use to ask your MP to support this.
Since the start of the outbreak there have been many voices in our community warning about the possibility of a spike in cases of M.E./CFS, following Covid-19 infection. A previous spike in post-viral fatigue was seen following the SARS outbreak (also a type of coronavirus).
Action for M.E. and other charities have raised concerns about some of the newly-published guidance aimed at supporting people with long Covid, based on addressing "deconditioning" with graded exercise therapy (GET), despite the potential for long Covid to lead to post-viral fatigue, which may develop into M.E./CFS.
We are working as part of Forward ME to challenge such guidance wherever it appears, and highlight good practice. Led by Physios for M.E., the group has produced a joint open letter to support this.
It says: "Instead of the usual ‘reconditioning’, we recommend that these patients should be helped to adopt a paced approach to activity management. This is used to avoid symptom exacerbation or post exertional malaise, a primary symptom of M.E., which can result in greater incapacity and even relapse. Similar issues also seem present in people struggling to recover from Covid infection [...] We feel it is vital that they do not receive graded exercise therapy (GET) as a matter of course because M.E. research and patient experience has shown it to be ineffective and harmful in many cases."
 
 
Recent News Articles
 
BBC Radio 4 on Tuesday 29th.  Long Covid -
Adam Rutherford explores the emerging science behind what’s come to be known as ‘long covid’.
Radio 4 , 11.00 am on Tuesday 29 September, plus 4.00 pm on Tuesday 13 October 

The Mirror on 26 September -
Brits describe their long-Covid symptoms that cause crippling pain for months

The Guardian on 26 September - 
I used to be Ms Covid Casual. But with a sick sister, that’s changed.  What I’ve learned about long-term Covid-19 has forced me to mentally reframe the risk factors and the way the future could play out
 
Daily Mail on 24 September -
Boris Johnson is urged to take action on 'long Covid' and formally recognise debilitating side effects of the disease that can last for MONTHS after recovery

The BMJ blog on 23 September -
The health, wellbeing, and employment arrangements for people with Long Covid remain unaddressed.  Layla Moran, MP and chair of the APPG on Coronavirus, says that awareness of Long Covid, and its seriousness, is too low 
 
BBC on 21 September -
Long Covid: 'My fatigue was like nothing I've experienced before', By Natasha Lipman, BBC News
 
TVNZ on 20 September -
Long-term fatigue dubbed the 'hidden toll' of Covid-19.  They say some of the symptoms of what’s currently known as ‘long Covid’ mirror a debilitating condition, seen in other viruses in the past, known as chronic fatigue syndrome or ‘ME’.  The little-known and mysterious illness, myalgic encephalomyelitis, is usually preceded by a viral infection and can last for years.
 
Long Covid.Org -
On 28th August 2020, LongCovid.org and partners sent a letter to Jeremy Hunt, Chair of the Health & Social Care Committee, to ask for the UK Government to assemble a multi-disciplinary Long Covid taskforce
 
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.

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The ME Association (MEA) Flu Vaccine Information and Guidance for 2020 - 2021. 
 
Dr Charles Shepherd, Hon. Medical Adviser, ME Association writes-
Each year we fully update the ME Association information and guidance on flu vaccination in relation to ME/CFS.
We hope to publish the free 2020-2021 leaflet by early October - once flu vaccination programmes begin, and we have all the relevant information about the new vaccine.
In the meantime you might find the following information helpful should you be thinking about having the flu vaccine this year.
The current [2019-20] 'ME Association information for the 2019 - 2020 flu vaccine' is available as a free download.  Most of the content will apply to the 2020-2021 vaccine - apart from the changes to eligibility criteria for a free NHS jab and related Covid-19 precautions:
 
Can someone with ME/CFS have a free flu jab if they want one?
If your GP is querying whether you are eligible to have a free flu vaccination on the NHS you need to point out that the answer is YES because:

• People with a chronic neurological disease are eligible for an NHS flu jab
  (NHS Green Book – Chapter 19, page 14).
• NHS England definitely classifies M.E. as a neurological condition: Intermittent and Unpredictable conditions.

 
Chief Medical Officer
“As you know, the risk of serious illness from flu and consequent hospitalisation and death is higher among those with underlying health conditions such as M.E.
“We know that people with chronic neurological conditions are approximately 40 times more likely to die if they develop flu than individuals who have no other underlying health conditions.
“The best way for people at risk from flu to protect themselves and their families is to get the flu vaccine. People with clinical risk factors are eligible to receive the seasonal flu vaccine free each winter.”
Dame Sally Davies, Chief Medical Officer, Department of Health, (2014)
 
COVID-19 and flu vaccination
A very important additional issue this year is the impact of COVID-19 and the Dept of Health’s decision to encourage far more people to have this flu vaccine protection.
A dose of flu plus COVID is going to be a very nasty combination of infections to have. People with M.E. are going to have to take this additional factor into consideration when deciding whether they are going to have a flu vaccine this year.
On a personal basis, I normally choose not to have a flu vaccine.  But I may well change my mind this year in view of COVID-19 - as this infection isn’t going to go away and there won’t be a COVID-19 vaccine available for widespread public use until any 2020-2021 flu epidemic is over.
 
 
Further recent articles -
Have you tried to get a flu vaccination in the UK?  (Guardian article, 22 Sept).
The Guardian would like to find out from people who’re eligible for a free flu vaccination about their experiences of getting the vaccine.  This article includes a form to complete.
 
Flu jabs limited due to high demand (from the BBC, 24 Sept 2020)
 
Boots stops taking flu jab bookings for under-65s as stocks run low (from the Guardian, 22 Sept 2020)
 
Worry over county’s flu vaccination statistics (from the Worcester News, Dec 2019)  
More than a third of the people eligible for free flu vaccines in Worcestershire did not take them up last winter, figures show.
 
Worcestershire NHS workers set the bar for flu jab uptake   (from Malvern Gazette, Feb 2020)
Frontline staff at Worcestershire Health and Care Trust have one of the country's best records for getting flu jabs to protect themselves and their patients, new figures reveal.
 
NHS Health Check, vaccinations and immunisations (Worcestershire County Council article)

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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.


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Explanations from M.E. Charities, plus recent news articles.

M.E. Association: article - Update: Post-Covid Fatigue, Post/Long-Covid Syndromes, and ME/CFS.
On 27 July Dr Charles Shepherd explained why the MEA has been devoting so much time and effort to covering issues relating to Post-COVID Syndromes.  The MEA article explained the particular reasons -

• the possibility that people with post-COVID fatigue and post/long-COVID syndromes are going to receive preferential treatment from the NHS for very similar health problems that occur in people with ME/CFS.
• people with post-COVID fatigue and post/long-COVID syndromes are being cautioned against the use of graded exercise treatment (GET) whereas NICE has refused to remove this treatment option from the current clinical guideline for ME/CFS.
• the considerable amount of research and research funding that is being directed at post-COVID fatigue and post/long-COVID syndromes compared to what has happened to government-funded research into ME/CFS.

There is a lot of overlap between post/long-COVID symptoms and the sort of Post-Viral Fatigue Syndrome (PVFS) that often precede a diagnosis of ME/CFS.  A number of post/long-COVID people are now developing post-COVID ME/CFS.   The MEA article gives MEA explanations on the ‘Key Principles of Management’, and ‘Post/Long Covid Groups’ - Post-COVID intensive care/hospital care syndrome;  Post/Long-COVID Self-Managed Syndrome;  plus Post/Long-COVID Fatigue Syndrome & Post-COVID ME/CFS.
 
Action for M.E. (AfME) CEO Sonya Chowdhury on the potential rise of M.E./CFS.
On 2nd July, AfME CEO Sonya Chowdhury spoke on BBC Points West about the potential rise in M.E./CFS following Coronavirus, and the number of people who are experiencing problematic or delayed recovery from COVID-19. She says:
"The ongoing exhaustion, and inability to return to previous activity, is something that has shocked many, including those who may have been asymptomatic or had relatively mild COVID, as they are now experiencing difficult and challenging symptoms."
We’ve seen a 30% increase in enquiries for information and often urgent support relating to the pandemic, from people with M.E. unable to access services and essential supplies. We have now begun formally recording numbers of those seeking support with post-Coronavirus symptoms that have not gone away.
 
MEAction give full details on Post-COVID-19 illness 
There have been some reports of long term illness in survivors of COVID-19; it is unclear how many people are affected at this stage.[1]  [2]  [3]
One small study from Wuhan, China, found that survivors of COVID-19 who tested negative twice before discharge from hospital still had some abnormalities in metabolism and liver function markers when discharged.[4]
Postviral fatigue syndrome and ME/CFS:
Myalgic encephalomyelitis, better known as ME, is a neurological disease that commonly begins after a virus, although other possible triggers include bacterial infections, injuries, surgery and other events.[15]  [14]  [25]
Some researchers and some patients use the term chronic fatigue syndrome (CFS), or ME/CFS to refer to ME, although CFS has different diagnostic criteria.[16]  [15]  [14] The older term Postviral fatigue syndrome (PVFS) is rarely used, although the World Health Organization recognize PVFS, ME, and CFS using the same diagnostic code. Some countries including the United States, deviate from this.[25]  [26]
 
BBC Spotlight: Covid-19 and Post-Viral Fatigue Syndrome with Dr Charles Shepherd.
BBC Spotlight (South-West) featured a report about people who had contracted Covid-19, survived the infection but had failed to fully recover their previous level of health.  Jenny Walrond, BBC Health and Science Correspondent, speaks with one woman whose functional improvement hasn’t materialised and says that thousands have joined social media sites to report a similar failure to recover.  The article gives a link to the two minute broadcast - "BBC Spotlight Report on the Long-Term Effects of Covid-19 Infection" (25 June 2020)
 
ITV News: "What is Long Covid?" - ITV News Interview featuring Dr Sarah Jarvis and Gez Medinger"
Six minute interview broadcast live on ITV at 1.40pm on 21st July.  News anchor Nina Hossain introduces the Long Covid SOS film  (https://www.youtube.com/watch?v=eYfDON0XsA8&feature=youtu.be), and speaks to Dr Sarah Jarvis and long hauler Gez Medinger about the condition.  Response from Dr Charles Shepherd amongst the comments.
 
M.E. Association: Coronavirus warning as victims staying sick for MONTHS with 'post-Covid syndrome'  On 7 July, The MEA’s article includes quotes from The Express article CORONAVIRUS sufferers may be experiencing a “post-COVID syndrome” according to expert Dr Charles Shepherd who warned that even “fit young adults” were being subjected to debilitating fatigue for months.  Thousands of Britons have reported a failure to recover from coronavirus infections despite surviving the virus.
The article included a link to a BBC Radio 5 Live discussion, when Dr Charles Shepherd was present, in which callers who revealed they had been ill for up to four months.
 
America’s top covid doctor turns ME/CFS into a subject for general discussion as the pandemic deepens
On 10 July, Tony Britton, Fundraising and PR Manager, of the MEA explain -
In a week in which we heard that cases of Covid-19 had doubled globally in the last six weeks to 12 million, President Trump’s top medical adviser on the coronavirus crisis has been showing a respect to ME/CFS that’s never been made so public before.
Dr Anthony Fauci, who has been striding the world pandemic stage usually in the shadow of the President, told a news conference organised by the International AIDS Society yesterday that the symptoms seen in long-haul Covid-19 recoverers resembled those seen in patients with M.E.
 
For some sufferers, Covid-19 doesn’t come with an end-by date – it just goes on and on   On 10 July, The MEA’s article includes quotes from The New Statesman article 
For #LongCovid sufferers - around 5 per cent of those who catch the disease - debilitating symptoms drag on interminably, with a quote from Dr Phil Whitaker’s - “Tantalisingly, what I hope will be an eventual research effort into #LongCovid patients may shed some light on other ill-understood conditions associated with a viral trigger, most notably chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).”
 
PhysiosforME: Covid-19: Post Viral Fatigue Syndrome and Myalgic Encephalomyelitis
This 30 minute YouTube recording from PhysiosforME gives an overview of Post Viral Fatigue Syndrome, its link to ME and management priorities.   It is vital for physiotherapists (and any other treating health professional) to understand a potential complication of a viral infection - Post Viral Fatigue Syndrome (PVFS).  Further information on their website.

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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.

ME isn’t 'all in the mind’, but it’s still a mystery Telegraph
By Caroline Lavender,  26 Nov 2012

As medical adviser to the ME Association and an ME sufferer,
Dr Charles Shepherd has spent the past two decades vigorously
fighting the dismissive attitude still common among the medical
profession. Here, he talks about the latest research into the disorder www.telegraph.co.uk/health/healthnews/9699911/ME-isnt-all-in-the-mind-but-its-still-a-mystery.html

Under the photo of Dr Charles Shepherd in the Telegraph:

A significant minority of doctors still don't believe in the existence of ME.
They refuse to diagnose or manage it – that is totally unacceptable,' says
Dr Charles Shepherd

Link to the Daily Telegraph article on the AfME website:

Refusal to diagnose M.E. is unacceptable
Dr Charles Shepherd, M.E. Association, talks about living with the illness and attitudes towards it. “A significant minority of doctors still don’t believe in the existence of M.E.,” he says. “They refuse to diagnose or manage it - that is totally unacceptable.”
Daily Telegraph, p 28
26/11/12

www.actionforme.org.uk/get-informed/news/daily-press-summary/daily-press-summary-26112012

Full article also on the MEA website:

‘ME isn’t ‘all in the mind’, but it’s still a mystery’ |
Daily Telegraph talks to Dr Charles Shepherd | 26 November 2012 by Tony Britton on November 26, 2012
www.meassociation.org.uk/?p=13809

From the Daily Telegraph 26 November 26 November 2012 (story by Caroline Lavender). There’s a good half a page all the way down to the fold on page 28 of the main edition.

As medical adviser to the ME Association and an ME sufferer, Dr Charles Shepherd has spent the past two decades vigorously fighting the dismissive attitude still common among the medical profession. Here, he talks about the latest research into the disorder It was in the late Seventies that Charles Shepherd became ill with myalgic encephalomyelitis, or ME as it is better known. It was an era, he recalls, when the condition was still dismissed as “hysterical nonsense” by most clinicians. Working as a young doctor at Cirencester Hospital, he had contracted a severe case of chickenpox from a patient with shingles. “I’d been perfectly fit and healthy. The infection had resolved but I felt mentally and physically knackered and kept having to take more and more time off,” he recalls.

Shepherd says he has never been truly well since. He “plods along”, though managing to enjoy life: he regularly walks Polar, his snow-white labrador, near the Cotswolds home he shares with his wife Pam, a nurse. On the day we meet, he is helping his daughter Suzie, a student in London, plan her 20th birthday (he also has two sons, Patrick, 28, and Alisdair, 31).

As medical adviser to the ME Association, Shepherd has spent the past two decades vigorously fighting the “all in the mind” attitude which, he says, is still common among the medical profession. He is convinced that this complex disorder, which has puzzled scientists for decades, has biological rather than psychological origins – although unlike some on the militant fringes of the ME community, he prefers to use reasoned persuasion rather than threats when discussing the cause.

“I unequivocally condemn people who send abusive emails,” he says, referring to the harassment of researchers, doctors and journalists – including the Telegraph columnist Dr Max Pemberton – who have speculated on the “psychological” explanation. “But I also understand why people feel so angry. A significant minority of doctors still don’t believe in the existence of ME. They refuse to diagnose or manage it – that is totally unacceptable.”

Now more commonly known as chronic fatigue syndrome (CFS), ME has come a long way since it was derided back in the Eighties as “yuppie flu” (its typical victim supposedly being a high-flying young professional). Today, it is recognised by the World Health Organisation, the National Institute for Health and Clinical Excellence (Nice) and much of the medical establishment as an often severely disabling disease, characterised by a bewilderingly wide set of symptoms, the chief ones being profound fatigue and widespread muscle pain. Difficulties with concentration and memory are also common.

Yet the debate over the cause of ME continues. Is it biological, psychological or a combination of both? The controversy flared up again in September, with the publication of findings finally disproving the theory that ME is linked to XMRV and mMVL, viruses that had previously been isolated in tissue samples taken from ME patients. Scientists at Columbia University, New York, found compelling evidence that detection of the viruses was a result of contamination, corroborating two previous studies’ findings.

The collapse of this theory, greeted with dismay by some ME patients, came as no surprise to Shepherd, who says he was always sceptical of the “hype” surrounding it. “In the US people spent a lot of money getting tested [for XMRV] and getting anti-retroviral drugs, but we have always advised against this because the research [from the University of Nevada, published in 2009, that implicated the virus ] hadn’t been properly evaluated or replicated.”

By taking this stance, Shepherd himself became the target of hate mail. “People get so desperate and put such faith in findings, they find it hard to have them criticised.”

ME researchers now view the illness as having three separate components: first, a (probable) genetic predisposition; second, a precipitating factor – which for 75 per cent of patients is an infection, usually viral, although occasionally other immune stressors such as immunisation may be a trigger; and finally the development of the condition itself. Other signs include fainting, low blood pressure, and irritable bowel syndrome.

The origin of such symptoms remains a mystery. One theory gaining favour is that ME patients have an aberrant immune response which fails to “switch off” after the original infection has resolved itself. In particular, it is possible that some ME patients have a surfeit of cytokines – chemicals produced by the immune system.

Another theory is that an auto-immune response (in which the immune system produces antibodies that attack the body’s own cells) may be involved. Other research is looking at potential abnormalities in the muscles of ME patients, with evidence that some sufferers produce excess acid when they exercise (Shepherd himself took part in research on muscle tissue – and still has a scar on his leg to prove it).

One study at Liverpool University is examining potential structural abnormalities in the mitochondria – cell components which produce energy in a usable form – in skeletal muscle.

A further focus of research are abnormalities in the hypothalamus. This tiny pea-shaped gland in the brain regulates a number of functions including hormone secretion (via the pituitary and adrenal glands). Problems here could help explain symptoms as diverse as sleep disorder, low blood pressure, temperature disturbance and heart, bowel and bladder problems. “A large number of papers demonstrate that ME patients have abnormalities in the hypothalamic-pituitary-adrenal axis,” says Shepherd.

In particular, he says, ME patients have been found to have lower levels of cortisol, a hormone secreted by the adrenal glands. He concedes that ME researchers are still “fitting together the jigsaw puzzle”, with some way to go before treatments are developed. “We have reached a point where there are drugs that would be worth trialling,” he says. But clinical trials are expensive to run and the pharmaceutical industry, the only realistic source of such funding, has shown little interest.

In the meantime, can graded exercise (a programme aimed at building up activity levels) and cognitive behavioural therapy, advocated by Nice, help with the symptoms?  
“The Nice guidelines on ME are not fit for purpose,” Shepherd argues. “They reflect the belief that this is a psycho-social illness.”  He himself is a fan of pacing – a technique which involves listening to your body to find the right balance between rest and activity.  
“I go swimming and walking, but within the limits of what I can do.”

He also feels progress has been stymied by rebranding ME as chronic fatigue syndrome. “Doctors never liked the term ME because it refers to inflammation of the brain and spinal cord, which has never been found,” he says. “But calling it CFS has made research trickier because CFS is an umbrella term for different pathologies – it’s a bit like grouping together all the different kinds of arthritis and saying they have the same cause.” He prefers the term myalgic encephalopathy, which reflects a significant neural abnormality in the brain.

He is encouraged, though, by progress at the Medical Research Council, where an expert group to encourage high-quality research into ME was set up in 2008, and where, last year, £1.5 million was ring-fenced for this purpose. So far funding has been approved for five studies – among them mitochondrial function and cytokine production in muscle tissue, immune system involvement and autonomic dysfunction.

So is Shepherd discounting entirely any psychological component in ME? “I have no problem,” he replies, “with the idea that the mind affects the body and the body affects the mind. Of course, people who are chronically ill get depressed and have psycho-social stress. But the point is that too much energy and money has gone into research based on the belief that ME is psycho-social – when the right route is biomedical.”