By Tony Britton, Fundraising and PR Manager, ME Association
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.
The CNN news channel reported the following remarks by Dr Fauci, who has been director of the National Institute of Allergy and Infectious Diseases (NIAID) since the days of President Reagan:
There is evidence that some people develop a long-term fatigue syndrome from coronavirus infections, Dr. Anthony Fauci said Thursday.
“There may well be a post-viral syndrome associated with Covid-19,” Fauci told a news conference organized by the International AIDS Society. The group is holding a Covid-19 conference as an add-on to its every-other-year AIDS meeting.
Fauci said the symptoms resemble those seen in patients with myalgic encephalomyelitis, or ME, once known as chronic fatigue syndrome.
“If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery,” Fauci said.
“There are chat groups that you just click on and see people who recovered that really do not get back to normal,” Fauci added. They report symptoms such as brain fog, difficulty concentrating and fatigue that resemble the symptoms of ME, he said.”
How #MEAction reported Dr Fauci's comments
The M.E. advocacy group #MEAction took their quotes (below) from this YouTube of the International AIDS Society news conference– scoring more highly on their accuracy than CNN. The question and answer about ME/CFS starts at 33.21:
“If you look anecdotally there is no question that there are a considerable number of individuals who have a post-viral syndrome that really in many respects can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus….you can see people who’ve recovered who really do not get back to normal that they have things that are highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome.
“Brain fog, fatigue, and difficulty in concentrating so this is something we really need to seriously look at because it very well might be a post-viral syndrome associated with covid-19.”
BBC World News discussion
Yesterday BBC World News also held a with a fascinating 12-minute general discussion about the coronavirus.
The people interviewed included Professor Paul Garner, from the Liverpool School of Tropical Medicine (bottom left), one of the “long-haulers” still recovering from a covid infection contracted on 19 March and who needs at least four sleeps a day to be able to function.
He made an impassioned plea for the views of patient support groups to be carefully listened to. He had learned so much on how to pace himself through his recovery from their literature.
Another panellist – neurologist Dr Avindra Nath (bottom right), clinical director of the US National Institute of Neurological Disorders and Stoke (NINDS) – answered direct questions about why ME/CFS sufferers felt so stigmatised by the reaction of most doctors to their illness.
Dr Nath is already a regular on the international ME/CFS research conference circuit and is directing a major, multi-centre study into the illness in the USA.
A tweet this afternoon from Sir Jeremy Farrar, director of the Wellcome Trust and a member of the Government's Scientific Advisory Group for Emergencies (SAGE), put everything into sombre context:
“Globally cases of COVID19 have doubled in six weeks to 12M – the pandemic continues to accelerate. Lockdowns buy time, they reduce transmissions & infections. They do not change the fundamentals of the virus, how infectious it is, the clinical illness it causes.”
The ME Association ME/CFS and Covid-19 Leaflets
The following leaflets and letter have been written by Dr Charles Shepherd (Hon. Medical Adviser) and Ann Innes (Welfare Rights Adviser).
They should provide you with essential information and links to external resources during this pandemic and national lockdown.
You can download each one (or all of them) by clicking the images below, or you will find them in the ME Association Website Shop.
We will keep them updated periodically and as the lockdown restrictions continue to change.
|The General Leaflet||Vulnerable Status Letter||Covid-19 and PVFS|
|Reducing Risk Infection||Changes to Benefits||Employment|
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
ME Association Registered Charity Number 801279