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==ME/CFS== {{Video|id=pkGXiJ1jM14|service=youtube|dimensions=550|description=COVID-19 and ME/CFS - Dr Nancy Klimas, Mar 13, 2020|alignment=left|urlargs=}} {{clear}} ====<span id="catchingcovid19">Risk of COVID-19 in patients with ME/CFS</span>==== There is a lack of evidence about ME/CFS patients developing COVID-19 illness; but a number of medical advisors have given their expert opinions on this. Immunologist and [[Myalgic encephalomyelitis|ME]] researcher Dr [[Nancy Klimas]] has said she believes people with ME/CFS are at a little higher risk of developing COVID-19 after exposure to the virus;<ref name="Klimas20200313">{{Cite web | url = https://www.youtube.com/watch?v=pkGXiJ1jM14 | title = COVID-19 and ME/CFS - Dr Nancy Klimas, Mar 13, 2020 | last = Klimas | first = Nancy | date = 2020-03-13|work=|access-date=Mar 24, 2020| archive-url = | archive-date = |url-status = | quote= | author-link = Nancy Klimas}}</ref> Dr [[Nigel Speight]], Dr [[William Weir]] and Dr [[Charles Shepherd]] have said they do not think there is an increased risk.<ref name="SpeightWeirMar20" /><ref name="SpeightMar20" /><ref name="MEA16Mar20" /> Dr [[Lucinda Bateman]] has said this is unknown.<ref name="Bateman20200323QA">{{Cite web | title = COVID-19 and ME/CFS/FM Frequently Asked Questions | last = Bateman | first = Lucinda | author-link = Lucinda Bateman | website = Bateman-Horne Center | date = 2020-03-23 | url = http://www.batemanhornecenter.org/wp-content/uploads/2020/03/COVID-19-FAQ-Public.pdf}}</ref>Klimas, Speight, Weir, Shepherd and Bateman have all advised ME/CFS patients to take additional precautions, and highlighted that there is a risk of ME/CFS becoming significantly worse after viral infections or after COVID-19.<ref name="Klimas20200313" /><ref name="SpeightWeirMar20" /><ref name="SpeightMar20" /><ref name="MEA16Mar20" /><ref name="Bateman20200323QA" /> ME/CFS includes [[:Category:Immune signs and symptoms|immune symptoms]] including a [[sore throat]], [[swollen lymph nodes]], and [[flu-like symptoms]], but patients are generally '''''not''''' considered to be severely immunocompromised, and immunosuppressant medications are unlikely to be used by most ME/CFS patients. <ref name="Klimas20200313" /> <ref name="canadianconsensus">{{Citation | last1 = Carruthers | first1 = Bruce M. | author-link1 = Bruce Carruthers | last2 = Jain | first2 = Anil Kumar | author-link2 = Anil Kumar Jain | last3 = De Meirleir | first3 = Kenny L. | author-link3 = Kenny De Meirleir | last4 = Peterson | first4 = Daniel L. | author-link4 = Daniel Peterson | last5 = Klimas | first5 = Nancy G. | author-link5 = Nancy Klimas | last6 = Lerner | first6 = A. Martin | author-link6 = Martin Lerner | last7 = Bested | first7 = Alison C. | author-link8 = Alison Bested | last8 = Flor-Henry | first8 = Pierre | author-link8 = Pierre Flor-Henry | last9 =Joshi | first9 = Pradip | author-link9 = Pradip Joshi | last10 = Powles | first10 = AC Peter | author-link10 = A C Peter Powles | last11 = Sherkey | first11 = Jeffrey A. | author-link11 = Jeffrey Sherkey | last12 = van de Sande | first12 = Marjorie I. | author-link12 = Marjorie van de Sande | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols | journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | pages = 7-115 | date = 2003 | pmid = | doi = 10.1300/J092v11n01_02 | url = http://www.investinme.org/Documents/PDFdocuments/CanadianDefinitionME-CFS.pdf }}</ref><ref name="ICP2011primer">{{citation | last1 = Carruthers | first1 = BM | author-link1 = Bruce Carruthers | last2 = van de Sande | first2 = MI | author-link2 = Marjorie van de Sande | last3 = De Meirleir | first3 = KL | author-link3 = Kenny de Meirleir | last4 = Klimas | first4 = NG | author-link4 = Nancy Klimas | last5 = Broderick | first5 = G | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = T | author-link6 = Terry Mitchell | last7 = Staines | first7 = D | author-link8 = Donald Staines | last8 = Powles | first8 = ACP | author-link8 = A C Peter Powles | last9 = Speight | first9 = N | author-link9 = Nigel Speight | last10 = Vallings | first10 = R | author-link10 = Rosamund Vallings | last11 = Bateman | first11 = L | author-link11 = Lucinda Bateman | last12 = Bell | first12 = DS | author-link12 = David Bell | last13 = Carlo-Stella | first13 = N | author-link13 = Nicoletta Carlo-Stella | last14 = Chia | first14 = J | author-link14 = John Chia | last15 = Darragh | first15 = A | author-link15 = Austin Darragh | last16 = Gerken | first16 = A | author-link16 = Anne Gerken | last17 = Jo | first17 = D | author-link17 = Daehyun Jo | last18 = Lewis | first18 = DP | author-link18 = Donald Lewis | last19 = Light | first19 = AR | author-link19 = Alan Light | last20 = Light | first20 = KC | author-link20 = Kathleen Light | last21 = Marshall-Gradisnik | first21 = S | author-link21 = Sonya Marshall-Gradisnik | last22 = McLaren-Howard | first22 = J | author-link22 = John McLaren-Howard | last23 = Mena | first23 = I | author-link23 = Ismael Mena | last24 = Miwa | first24 = K | author-link24 = Kunihisa Miwa | last25 = Murovska | first25 = M | author-link25= Modra Murovska | last26 = Stevens | first26 = SR | author-link26 = Staci Stevens | title = Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners | date = 2012 | isbn = 978-0-9739335-3-6 | url = http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf }}</ref> A study in 2013 assessed immune system responses to the flu [[vaccine]] in people with ME/CFS, and found them similar to the immune responses of healthy controls, which indicated that vaccine effectiveness was similar in ME/CFS patients, although the study did not include a long-term follow-up to assess duration of vaccine effectiveness or overall effect on ME/CFS symptoms.<ref>{{Cite journal | last = Prinsen | first = Hetty | author-link = | last2 = de Vries | first2 = I. Jolanda M. | author-link2 = | last3 = Torensma | first3 = Ruurd | author-link3 = | last4 = Pots | first4 = Jeanette M. | author-link4 = | last5 = Mulder | first5 = Sasja F. | author-link5 = | last6 = van Herpen | first6 = Carla M. L. | author-link6 = | last7 = Elving | first7 = Lammy D. | last8 = Bleijenberg | first8 = Gijs | author-link8 = Gijs Bleijenberg | last9 = Stelma | first9 = Foekje F. | date = 2012-12-17 | title = Humoral and cellular immune responses after influenza vaccination in patients with chronic fatigue syndrome | url =https://doi.org/10.1186/1471-2172-13-71 | journal = BMC Immunology | volume = 13 | issue = 1 | pages = 71|doi=10.1186/1471-2172-13-71|issn=1471-2172|pmc = 3534525|pmid=23244635|access-date=|quote=|via=}}</ref> This means most ME/CFS patients would '''''not''''' be considered to be at very high risk of COVID-19 illness.<ref name="Klimas20200313" /> The unproven [[autoimmune hypothesis]] states that a subtype of ME involves autoimmunity, which is an overactive immune system rather than a weakened immune response.<ref name="OMF2018research">{{Cite web | url = https://www.omf.ngo/2018/02/28/omf-funded-research-t-cells-molecular-immunology/ | title = OMF-funded research: T cells and molecular immunology | last = Open Medicine Foundation | first = | author-link = Open Medicine Foundation | date = Feb 28, 2018 | website = Open Medicine Foundation|language=en-US|archive-url=|archive-date=|url-status= | access-date = 2019-07-11}}</ref> Evidence for this theory is limited. ===Drug related risks=== The following drugs may be used for some ME/CFS symptoms and are a possible concern * '''<span id="ibuprofen">[[Ibuprofen]]</span>''' - Ibuprofen drugs (Nurofen, Bruprofen, Advil, Midol, Motrin, Motrin) are anti-inflammatories commonly used for cold/flu symptoms and for ME/CFS. There have been some reports that ibuprofen taken for COVID-19 may prolong the illness and increase it's severity. Several countries including the UK and France now recommend that people with suspected or confirmed COVID-19 avoid ibuprofen and '''use paracetamol / acetaminophen''' (e.g., Tylenol) instead, although the evidence for this is relatively limited.<ref name="MEA16Mar20" /><ref name="Day20200317">{{Cite journal | last = Day | first = Michael | date = 2020-03-17 | title = Covid-19: ibuprofen should not be used for managing symptoms, say doctors and scientists |url =https://www.bmj.com/content/368/bmj.m1086 | journal = BMJ|language=en | volume = 368|doi=10.1136/bmj.m1086|issn=1756-1833|pmid=32184201}}</ref><ref>{{Cite web | url = https://www.nhs.uk/conditions/coronavirus-covid-19/self-isolation-advice/ | title = Stay at home advice - Coronavirus (COVID-19) | last = National Health Service | first = | author-link = National Health Service | date = 2020-02-28 | website = nhs.uk|language=en|archive-url=|archive-date=|url-status= | access-date = 2020-03-23}}</ref> There is no suggestion that ibuprofen affects the risk of catching COVID-19. * '''[[Rituximab]]''' - The MS Society has stated that taking rituximab, which has been used in clinical trials for ME/CFS, may affect the risk of catching COVID-19.<ref name="Covid-19-MS">{{Cite web | url = https://www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifying-therapies/covid-19-coronavirus-and-ms | title = COVID-19 coronavirus and MS | last = MS Society | first = | author-link = | date = | website = mssociety.org.uk|language=en|archive-url=|archive-date=|url-status= | access-date = 2020-03-23}}</ref><ref>{{Cite web | url = https://renal.org/wp-content/uploads/2020/03/BAPN-COVID-19-patient-info-for-HD.PD_.Immunosuppression-17March20.pdf | title=Coronavirus (SARS-CoV-2) and its associated illness (COVID-19) {{!}} Information and Guidance for Children on Haemodialysis, Peritoneal Dialysis and Immune suppression (including Renal Transplants) | last = Renal Association | first = | author-link = | date = 2020-03-17 | website = renal.org|archive-url=|archive-date=|url-status= | access-date = 2020-03-23}}</ref> * '''[[Ampligen]]''' - Ampligen or ''rintatolimod'' is sometimes used by ME/CFS patients, it is an [[antiviral]] immunostimulant rather than immunosuppressing drug, and is being tested for the treatment of COVID-19 illness in Japan.<ref>{{Cite web | url = https://adisinsight.springer.com/drugs/800001203 | title = Rintatolimod - AIM ImmunoTech - AdisInsight | website = adisinsight.springer.com | access-date = 2020-03-23}}</ref> There is no information about whether it may help prevent COVID-19 in ME/CFS patients. *'''[[Fludrocortisone]]''', a [[corticosteroid]] (steroid) - brand names include Florinef. This may be used by patients with [[Postural orthostatic tachycardia syndrome|POTS]], which is common in ME/CFS patients.<ref name="Fludrocortisone-Drugbank">https://www.drugbank.ca/drugs/DB00687</ref> * Other '''[[corticosteroid]]s''' (steroids) if they could suppress the immune system.<ref name="UKgov-vulnerable">{{Cite web | url = https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults | website = gov.uk | access-date = 2020-04-06 | title = COVID-19 guidance on social distancing and for vulnerable people | last = Public Health England}}</ref> * Any other '''immunosuppressant drugs or therapies''', including chemotherapy treatments and certain targeted cancer treatments<ref name="UKgov-vulnerable" /><ref name="UKgov-extremelyvulnerable">{{Cite web | title = Guidance on shielding and protecting extremely vulnerable people from COVID-19 | url = https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19 | website = gov.uk | access-date = 2020-04-06 | last = Public Health England}}</ref> {{Quote box|I have now reached the conclusion that people with pre-existing health conditions that make them more vulnerable to lung complications (which may or may not be the case with ME/CFS – at this stage we just don’t know), or have a condition like ME/CFS where an infection such as this will almost certainly cause a relapse, or significant exacerbation of symptoms, need to be doing far more to protect themselves, and to socially distance themselves from other people, than official NHS guidance indicates. In particular, for those who are not housebound, this applies to social mobility and what you can do (and cannot do) if you decide to leave your home.<ref name="MEA16Mar20"/> | author = [[Charles Shepherd]], ME Association | date = Mar 16, 2020 | title = Advice from the UK's ME Association}} ====<span id="deathrisk">Risk of death or serious complications in ME/CFS patients</span>==== {{Quote box|Although ME is a "chronic condition" my gut feeling is that they are not actually at greater risk of dying from the virus itself than healthy people. The conditions which put people at extra risk would be things like severe asthma or COPD, or immunosuppressed people eg those on chemotherapy for cancer. The biggest worry therefore for ME sufferers is that catching the virus will make their ME much worse, and of course people in the 25% group do not have much leeway. It might even be that worsening of their already severe ME could be a bigger threat to life than the virus itself.<ref name="SpeightMar20" /> | author = [[Nigel Speight]] | date = Mar 2020 | title = 25% ME Group for Severe ME}} ====<span id="triggerforME">Risk of developing ME/CFS after COVID-19</span>==== ME/CFS has been linked to many different viruses, but it is not known what the likelihood is of developing ME/CFS after COVID-19 illness. {{See also|Postviral fatigue syndrome}} ===<span id="medicaladvisors">ME/CFS charity medical advisors' COVID-19 statements</span>=== *Mar 30, 2020, ME Association, [https://www.meassociation.org.uk/2020/03/me-association-full-guidance-coronavirus-and-me-cfs-by-dr-charles-shepherd-30-march-2020/ ME Association full guidance: Coronavirus and ME/CFS by Dr Charles Shepherd]<ref name="MEA30Mar20">{{Cite web | url = https://www.meassociation.org.uk/2020/03/me-association-full-guidance-coronavirus-and-me-cfs-by-dr-charles-shepherd-30-march-2020/ | title = ME Association full guidance: Coronavirus and ME/CFS by Dr Charles Shepherd {{!}} 30 March 2020 | last = Shepherd | first = Charles | author-link = Charles Shepherd | date = 2020-04-06 | website = ME Association|language=en-GB|archive-url=|archive-date=|url-status= | access-date = 2020-03-30}}</ref> *Mar 23 2020, Bateman Horne Center, [http://www.batemanhornecenter.org/covid19 COVID-19 resources] *Mar 17, 2020, ME Association, [https://www.meassociation.org.uk/2020/03/coronavirus-covid-19-latest-government-advice-and-what-it-means-for-people-with-me-cfs-17-march-2020/ Coronavirus Covid-19: Latest Government advice and what it means for people with ME/CFS]<ref name="MEA17Mar20">{{Cite web | url = https://www.meassociation.org.uk/2020/03/coronavirus-covid-19-latest-government-advice-and-what-it-means-for-people-with-me-cfs-17-march-2020/ | title = Coronavirus Covid-19: Latest Government advice and what it means for people with ME/CFS {{!}} 17 March 2020 | last = Shepherd | first = Charles | author-link = Charles Shepherd | date = 2020-03-17 | website = ME Association|language=en-GB|archive-url=|archive-date=|url-status= | access-date = 2020-03-23}}</ref> *Mar 16, 2020, ME Association, [https://www.meassociation.org.uk/2020/03/me-association-guidance-coronavirus-covid-19-and-me-cfs-by-dr-charles-shepherd-16-march-2020/ ME Association Guidance: Coronavirus and ME/CFS by Dr Charles Shepherd]<ref name="MEA16Mar20">{{Cite web | url = https://www.meassociation.org.uk/2020/03/me-association-guidance-coronavirus-covid-19-and-me-cfs-by-dr-charles-shepherd-16-march-2020/ | title = ME Association Guidance: Coronavirus and ME/CFS by Dr Charles Shepherd {{!}} 16 March 2020 | last = Shepherd | first = Charles | author-link = Charles Shepherd | date = 2020-03-16 | website = ME Association|language=en-GB|archive-url=|archive-date=|url-status= | access-date = 2020-03-23}}</ref> *Mar 2020, 25% ME Group, [https://25megroup.org/download/1796/?v=3236 re Coronavirus and members of the 25% ME Group, Severe ME charity | Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to 25% ME Group | Update to the advice given on 29 February 2020],<ref name="SpeightWeirMar20">{{Cite web | url = https://25megroup.org/download/1796/?v=3236 | author-link = Nigel Speight | last = Speight | first = Nigel | last2 = Weir | first2 = William | author-link2 = William Weir | title = re Coronavirus and members of the 25% ME Group, Severe ME charity {{!}} Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to 25% ME Group {{!}} Update to the advice given on 29 February 2020 | date = Mar 2020 | website = 25megroup.org}}</ref> *Mar 2020, 25% ME Group, [https://25megroup.org/download/1796/?v=3226 re Coronavirus and members of the 25% ME Group, Severe ME charity Types | Message from Dr Nigel Speight, Medical Advisor to 25% ME Group]<ref name="SpeightMar20">{{Cite web | url = https://25megroup.org/download/1796/?v=3226 | author-link = Nigel Speight | last = Speight | first = Nigel | title = re Coronavirus and members of the 25% ME Group, Severe ME charity Types {{!}} Message from Dr Nigel Speight, Medical Advisor to 25% ME Group | date = Mar 2020 | website = 25megroup.org|others=[[William Weir]]}}</ref> ===Research on ME/CFS and COVID-19=== COVID-19 is a new illness and research on the effects on ME/CFS patients has not been published yet. Patient surveys in progress include: *[https://www.zorgvolg.nl/mecvscor.php Corona ME/CFS study] - [[ME/CVS-Stichting Nederland]] - in Dutch :A Dutch patient organization survey to assess if the risk of contracting COVID-19 is higher for those with ME/CFS, and if symptoms are more severe in ME/CFS patients.<ref name="EMEA-q12020">http://europeanmealliance.org/news-Q12020-001.shtml</ref><ref name="MECVS-survey-23Mar2020">{{Cite web | url = https://mecvs.nl/nieuws/persbericht-covid-19-onder-me-cvs-patienten/ | title = Persbericht: COVID-19 onder ME/cvs patiënten | date = 2020-03-24 | website = ME/CVS Stichting Nederland|language=nl | access-date = 2020-10-06}}</ref> The [[European ME Alliance]] is suggesting that non-Dutch speakers use an online translation tool to complete it.<ref name="EMEA-q12020" />
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