Tomorrow - ME/CFS & Long Covid Radio Discussion.
BBC Radio Cornwall to host live discussion with Dr Shepherd on Monday 1st February. BBC Radio Cornwall will be hosting up to 45 minutes of discussion about ME/CFS and Long Covid with the M E Association’s medical adviser, Dr Charles Shepherd, from about 3.10pm on Monday (1st February).
LIVE LINKS (to BBC Radio Cornwall) and further information from the MEA website. 
 
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.
 
•  B.B.C.  •  Coronavirus (COVID 19)  •  M.E. Association  •  Post COVID Syndrome (Long COVID) 

•  Post COVID Syndrome (Long COVID) 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.


•  Action for ME  •  Coronavirus (COVID 19)  •  M.E. Association 
•  MP  •  National Newspapers  •  N.I.C.E. •  Parliament U.K.  •  Post COVID Syndrome (Long COVID) 

The ME Association (MEA) Free Covid-19 Vaccine Leaflet, and MEA Covid-19 Vaccine Poll.
Action for M.E. (AfME) publish Forward-ME’s Statement on the Covid-19 Vaccine for people with ME/CFS.
Plus Covid-19 news for all Worcestershire residents.
 
Free Leaflet: Covid-19 Vaccine Update Options, eligibility, safety and ME/CFS - what we know so far.  Dr Charles Shepherd, Hon. Medical Adviser, of the ME Association explains in detail the latest situations.  This three page free leaflet will be updated as the situation continues to develop. Discussions include -

• Covid-19 vaccination priority and ME/CFS
• The safety of the Covid vaccines in general
• The safety of the Covid vaccines for people with ME/CFS
• Vaccine administration practicalities
• Making a decision whether to have the vaccine

You can download the leaflet here without registering via the MEA website shop.
 
MEA Monthly Poll: Will you have the COVID-19 vaccine? 
The MEA ask if you are going to have a Covid-19 vaccine when it is made available to you.
As well as taking part in the poll, the MEA would like to hear from anyone with ME/CFS who has had a COVID-19 vaccine:

• Why did you receive the vaccine at this time?
• How did you feel after the inoculation?
• Did you experience any discomfort?
• Did you experience any side effects that might have included an exacerbation of your ME/CFS symptoms?

Please include your comments in any of the discussions on COVID-19 vaccines that are taking place on ME Association Facebook, or send them direct to the ME Association via email: Feedback@meassociation.org.uk
 
Joint charity statement on Covid-19 vaccine. 
published by Action for M.E.
Many people with M.E. have contacted Action for M.E. and other M.E. charities for information about the Covid-19 vaccine. We thought it would be helpful to have an aligned position across charities to avoid adding to any confusion and anxiety about having the vaccine.
The 25% M.E. Group, Action for M.E. and the ME Association have collaborated to agree a joint statement for Forward ME, the coalition of charities led by the Countess of Mar. You can also read it on our vaccine information page. In summary:

• We have no data from clinical trials of Covid-19 vaccines specifically relating to M.E./CFS.
• This means that vaccination must be an individual decision based on a clear understanding of the risks and benefits associated with it.
• While it is possible there might be a minor reaction to the vaccine, this will almost certainly be much less severe than catching Covid 19 itself, particularly for those severely affected.
• Potential risks associated with having the Covid-19 vaccine include exacerbation of symptoms and, for a very small number of people, an allergic reaction.

Priority group 6 as listed by the Joint Committee on Vaccination and Immunisation (JCVI) includes people with “underlying health conditions which put them at higher risk of serious disease and mortality.” The main risk groups identified by the committee include “chronic neurological disease” and we believe this includes M.E. The ME Association has written to the Chief Medical Officer for England, Prof Chris Witty, to seek confirmation.

Information on COVID-19 vaccination for eligible adults.
A person eligible to book a free NHS coronavirus (Covid-19) vaccine received a letter (below) plus ‘A Guide for Older Adults’ leaflet.
The Government’s COVID-19 vaccination Guidance is available online, plus the leaflet is downloadable.
For further Government information on the COVID-19 vaccination please visit: www.nhs.uk/covidvaccination.

The Worcestershire County Council Coronavirus (COVID-19).
information now includes links to

• Worcestershire COVID-19 dashboard
• Coronavirus (COVID-19) Vaccinations

 
Dr Kathryn Cobain, the Director for Public Health in Worcestershire’s message published on 5th January 2021, included -
Worcestershire’s infection rates are at the highest we have ever seen.  I am concerned about this level of spread, and the risk it poses to our health and the lives of our vulnerable and elderly residents. We need to act now to protect one another, prevent the virus spreading further and reduce the demand on our hospitals. 
Please now stay at home, don’t go out unless you need to, for example to buy food or collect medicines. The Government has set out the clear limitations of the lockdown and I ask you to read the restrictions and follow the rules. You can read a full explanation of all the restrictions on the government’s website;
Once again, Worcestershire County Council’s Here2Help service is available to anyone who needs support or is clinically extremely vulnerable (shielding). If you have no-one to turn to for help, our service can respond and provide help such as collecting medicines and getting shopping. You can reach the Here2Help service online 
If you are on the Government’s shielding list, you will be receiving guidance about what to do now. It is key that you socially distance, and you reduce your physical contact with others. The governments webpages are updated regularly and you can read detailed guidance on shielding their website.
 
 
For further information on the Covid-19 vaccinations see our latest Covid-19 vaccine information and, also see the flu vaccine information. generally, see.  Plus, for news on Coronavirus (Covid-19) 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)  •  Forward ME  •  Local News  •  M.E. Association  •  Worcestershire  •  Worcestershire County Council