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ME Research Proposal by Dr Willy Weir and The London School of Hygiene and Tropical Medicine

Countrygirl

Senior Member
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UK
Dr William Weir, Consultant in Infectious Diseases with a special interest in ME, in partnership with The London School of Hygiene and Tropical Medicine, is planning research into ME by collecting blood samples from people who had Covid and are now experiencing Long Tail Covid. It is highly likely that a percentage of them will develop ME and this will be a great opportunity to observe changes in the blood as the disease develops.

At the moment, this can only be a pilot trial but, if donations are forthcoming, then it is hoped to extend the trial further. This is a major opportunity to observe how ME develops following a viral infection.

I have attached Dr Weir's resume for patients below. If you are on Twitter (I am not) please do tweet it for him.

Please do encourage anyone with Long Tail Covid to sign up on The London School of Hygiene and Tropical Medicine's website when it is ready. Dr Weir hopes to provide further details later this week on how patients can sign up for the trial. It is preferred that they have not been ill longer than four months, but the crucial factor is the availability of blood samples from the early days of their illness rather than when they became ill. The hospitals have kept the Covid blood available for research purposes.

Many thanks!


Proposed Research into Post Covid Syndrome and ME/CFS Under the Auspices of The London School of Hygiene and Tropical Medicine.

Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
Introduction:


“Long Covid” is beginning to look very much like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Dr Anthony Fauci, Director of the United States’ National Institute of Allergy and Infectious Disease Institute certainly thinks so, as does Professor Anthony Komaroff of the Harvard University Medical School. Professor Komaroff has much experience in the field of ME/CFS and has published widely on the subject. The symptoms described by sufferers are similar to the point of being identical, and the majority of patients with ME/CFS prior to the Covid-19 pandemic also describe an onset triggered by an infection. The only difference is that most people with pre-Covid-19 ME/CFS present in a sporadic, non-epidemic fashion, following an endemic, community acquired infection. They therefore have not presented in such concentrated numbers as is the case with Long Covid.

The consequence has been less publicity, and crucially, very little understanding within the medical profession of its true nature. As previously stated, pre-Covid-19 ME/CFS is usually triggered by an infection, and a range of very disparate infections have been recognised as triggers. These range from Epstein-Barr virus through to Salmonella infections and giardiasis. Thus ME/CFS can be triggered by a mixed bag of viruses, bacteria, or protozoa, indicating that the initiating impetus for ME/CFS is a non-specific immunological challenge. This principle suggests that Covid-19 can be added to the range of infections that can trigger ME/CFS.

The scientific question which has always been difficult to answer is: what happens during the acute phase of a triggering infection which then leads to the development of ME/CFS? Also, how do those who don’t progress to ME/CFS and recover, differ from the unfortunates who do? One of the recognised immunological abnormalities in ME/CFS is inappropriate and ongoing immunological activity. This is at variance with the normal, healthy immune response to an acute infection. In the latter case, the immune system responds to the presence of an infecting organism, acts appropriately to clear it and then shuts down afterwards with resolution of the symptoms of the infection. In ME/CFS this does not happen, and immunological activity continues inappropriately despite the fact that the triggering organism is no longer present. The simplest analogy is that of an old-fashioned gramophone needle getting stuck and replaying repeatedly in the same groove. Therefore: what causes the needle to get stuck?

Outline of Proposal:

The Covid-19 pandemic now presents the opportunity to look at blood samples from people with Long Covid, preferably taken as early as possible in their illness. The intention will be to look for any factors which may have contributed to its development. Ideas for this range from low Vitamin D levels, to concurrent but “silent” virus infections, which are quite common. A longer shot will take in the possibility of what are known as endogenous retroviruses being released from the patient’s genome by the metabolic stress of the triggering infection. It is proposed that these may then reinsert at a different part of the genome, with pathological results.


The study will be carried out through the ME Biobank at The London School of Hygiene and Tropical Medicine. Blood samples will be required from patients with Long Covid, preferably as early as possible, and not more than 4 months after the onset of the infection. Samples already taken and stored during the acute stage of the infection (usually in hospitalised cases) will be invaluable. Initially the blood samples would have to be taken from patients ambulant enough to get to central London. Nonetheless dependant on funding of the study, a more comprehensive operation may allow for housebound post-Covid patients being visited at home for their blood to be taken. An additional and important component of the study would comprise blood from a friend or relative who also experienced Covid-19 infection but who made a complete recovery. The intention being that their blood would act as a “control”, providing comparison with blood from someone with Long Covid.

It should be emphasised that this study is at the very earliest stages of preparation. In particular much will depend upon the amount of funding which can be raised. We are especially seeking independent funding from the ME community; this may make the difference between a useful but small pilot, to something larger and more ground-breaking. Further information as to how to register interest in this study either as a participant or financial donor will be made available shortly.

William Weir FRCP, FRCP (Edin)
Consultant in Infectious Disease
 

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Countrygirl

Senior Member
Messages
5,511
Location
UK
Dr Weir has updated his resume of his research into Long Covid ME while the London School of Hygiene and Tropical Medicine are planning additional research trials into Post Covid Syndrome/Long Covid and ME, providing funding is made available. In the meantime, Dr Weir will be conducting a pilot trial and hopes to expand the research once funding is available.

Yesterday, Dr Weir sent me the following email from the London School of Hygiene and Tropical Medicine.

(@Tom Kindlon Please may I request that you tweet it for me, please? Thank you!)

RESEARCH PROJECTS INTO LONG COVID-19. PLEASE SIGN UP ON THE WEB SITE OF THE LONDON SCHOOL OF HYGIENE AND TROPICAL MEDICINE IF YOU ARE PREPARED TO PARTICIPATE IN ANY OF THESE TRIALS.

People who want to participant in Dr Weir's and/or the additional research trials being conducted at the LSHTM email their details to : mecfsbiobank@lshtm.ac.uk

The website is: cureme.lshtm.ac.uk/participants

Contents of email from The London School of Hygiene and Tropical Medicine 7th September 2020

As promised in our discussion, we have put up an announcement on our website so that people experiencing ongoing symptoms of COVID-19 may register interest in any potential future studies, should we be successful in finding funding. The statement (found at: https://cureme.lshtm.ac.uk/participants/ ) is the following:

“Post-COVID-19 Long-haulers – Join the mailing list

With the increasing reports of ‘Long COVID-19’ or ‘long-haulers’, we are looking into future research possibilities in this area. Some people that have COVID-19 may go on to develop ME/CFS and following up these people may uncover clues on how the disease progresses.

Please note that currently we do not have funding in place for a research project and, in the case that we do secure funding, there is no guarantee that all people experiencing the long-term effects of COVID-19 will be eligible to participate. However, please contact us if you are still experiencing long-term effects from COVID-19 infection over 3 months ago. A common symptom of long haul COVID-19 is extreme tiredness when you try to do anything. If you would be interested in participating in possible future studies, please contact us via email address mecfsbiobank@lshtm.ac.uk with your name, date of birth, address and specifying your interest in a post-COVID-19 study and we will add your information to our post-COVID-19 mailing list. If you have already had a past diagnosis of ME/CFS, please let us know.

Your details will be stored securely on the London School of Hygiene & Tropical Medicine server and will not be shared with anyone outside of the CureME research team. Should a project go ahead, we will contact you via the email address supplied.”

Please feel free to pass this on to Jenny Wilson (as I don’t believe I have her email address) and I can begin to keep a log of anyone that gets in touch with us

Shennae O’Boyle

Research Assistant

ITD/CRD/Disability Group, K/G23a

London School of Hygiene & Tropical Medicine
 
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