ME and Long Covid Infographic references

Links to references included in the infographic posters: 

1a - 1l for symptoms and what different terms mean (e.g. CFS, ME/CFS, CFS/ME) see link here (or http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf)

2 Dr Clare Gerada, see http://www.investinme.org/IiME%20Conference%202013/IIMEC8%20Conference%20Report.htm

3 In very young children irritability may be more noticeable than fatigue see http://www.iacfsme.org/portals/0/pdf/pediatriccasedefinitionshort.pdf

4a, 4b ‘Dr Nigel Speight—ME Handout Myalgic Encephalomyelitis (ME) in Childhood’ available at http://voicesfromtheshadowsfilm.co.uk/nigel-speight-me-handout/

5a - 5e ‘A report of the CFS/ME Working Group’ (to the Chief Medical Officer)’ http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4064945.pdf

6 http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf

7 http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx

8 ‘Risk factors for severe ME/CFS’ by Pheby D. & Saffron L. see http://biolmedonline.com/Articles/vol1_4_50-74.pdf 

9 based on data at

http://www.meassociation.org.uk/about/what-is-mecfs/ and http://www.investinme.org/Article 651 — ICC for ME— Bruce Carruthers.htm 

and ‘Nice Clinical Guideline 53’ page 4 (http://www.nice.org.uk/nicemedia/live/11824/6193/36193.pdf) and http://fingertips.phe.org.uk/profile/general-practice/data

10 http://www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf

11 ‘The DWP accepts the World Health Organisation classification of M.E.’ see http://www.meassociation.org.uk/2011/11/cfsme-not-a-mental-health-disorder-minister-for-welfare-reform-tells-countess-of-mar-21-november-2011/

12 http://www.meresearch.org.uk/what-is-me/

13 http://www.neural.org.uk/living-with-a-neurological-condition/what-is-a-neurological-condition;

A often linked to the presence of Fibromyalgia which is a condition that can often be seen alongside ME see http://sacfs.asn.au/download/consensus_overview_fms.pdf

aa www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/how-does-coronavirus-affect-the-brain;

bb www.medrxiv.org/content/10.1101/2020.10.20.20215863v1;

cc https://evidence.nihr.ac.uk/themedreview/living-with-covid19#Key;

dd International Consensus Primer;

ee www.nice.org.uk/guidance/ng206;

ff https://meassociation.org.uk/product-category/covid-19/;

gg https://meassociation.org.uk/wp-content/uploads/MEA-PVF-and-PVFS-Following-Coronavirus-Infection-30.04.20.pdf;

hh Dr Rachel Pope, Senior Lecturer, University of Liverpool, https://covid.joinzoe. com/post/covid-long-term;

ii www.ons.gov.uk;

jj www.weforum.org/agenda/2021/10/oxford-university-study-long-covid-symptoms/ & https://www.frontiersin.org/articles/10.3389   /fneur.2021.701419/full;

kk https://evidence.nihr.ac.uk/themedreview/living-with-covid19#Key; 

ll https://covid.joinzoe.com/data;

mm https://www.nice.org.uk/guidance/ng188;

nn https://www.rcot.co.uk/conserving-energy;

oo https://www.medrxiv.org/content/10.1101/ 2020.10.15. 20205054v1;

pp https://evidence.nihr.ac.uk/themed review/living-with-covid19#Key;

qq BMJ2020;371 doi:https://doi.org/10.1136/bmj.m4470;

rr Lancet, 1993, 341, 842 and 1162-1163;  s

ss https://www.medrxiv.org/ content/10.1101/2020.12.24.20248802v1;

tt PENE (Post-Exertional Neuroimmune  Exhaustion. See page 7 of the ‘International Consensus Primer for Medical Practitioners’ (available at https://doctorswith.me/international-consensus-primer-for-medical-practitioners)

v v https://meassociation.org.uk/about-what-is-mecfs/prognosis-and-quality-of-life/#Part%201; wwwww.worldometers.info/world-population/uk-population/

xx www.frontiersin.org/articles/ 10.3389/fneur.2021.701419/full;

yy www.ncbi.nlm.nih.gov/pmc/articles/PMC7927578/;

A1 www.nice.org.uk/news/article/nice-outlines-steps-needed-to-put-me-cfs-guideline-into-practice; A2https://meassociation.org.uk/2022/05/bbc-radio-4-womans-hour-discusses-me-cfs/;

A3 ‘Fabricated or Induced Illness and Perplexing Presentations: Abbreviated Practice Guide for Social Work Practitioners.’ Birmingham: BASW. (Available at www.basw.co.uk);

A4 www.managed healthcareexecutive.com/view/eye-problems-common-covid-19-patients; 

A5 https://uk.news.yahoo.com/fair-health-study-reports-76-170300609.html;

A6 https://25megroup.org/download/1796/?v=2880;

A7 https://bmjopen.bmj.com/content/bmjopen/12/5/e058128.full.pdf;

A8 https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2;

A9 https://appgme.co.uk/publications;

A10 See investinme.org.uk; meresearch.org.uk; meassociation.org.uk;

A11 https://www.frontiersin.org/articles/10.3389/fneur.2021.701419/full;

A12 https://www.sciencedaily.com/releases/2021/10/211013114112.htm;

A13 Estimated self-reported incidence of 2.8% of the UK population having Long Covid (pub. April 2022, www.ons.gov.uk) does not match a multitude of research study data published in 2021 showing between 10-50+% Covid patients actually go on to develop Long Covid (most studies give figures of 30+%);

A14 https://medicalxpress.com/news/2021-06-asymptomatic-covid-patients.html;

A15 https://populationdata.org.uk/somerset-population/;

A16 Epidemiological and clinical factors associated with post-exertional malaise severity in patients with myalgic encephalomyelitis/chronic fatigue syndrome, Ghali et al (2020) available at https://pubmed.ncbi.nlm.nih.gov/32571354/;

A17 autopsy reports/death certificates —Sophia Mirza Neuropathological Report and Death Certificate (http://www.sophiaandme.org.uk/neuropathologicalreport... and http://www.sophiaandme.org.uk/legal/l1.jpg?fs=e&s=cl);  Lynn Gilderdale autopsy (https://niceguidelines.blogspot.com/.../lynn-gilderdales...); Alan Cocchetto summary of autopsy report of a person with ME (https://www.ncf-net.org/forum/Autopsy.htm...); Phoenix Rising autopsy reports (https://forums.phoenixrising.me/.../are.../page-25...); A18www.euronews.com/next/2022/03/15/long-covid-has-been-found-in-1-in-4-symptomatic-children-a-new-study-finds-what-are-the-sy;

A19 Jodie Bassett’s ‘The HFME 3 part M.E. ability and severity scale‘(www.hfme.org/PDF/ME_Ability_Scale.pdf?);

A20 www.rcn.org.uk/news-and-events/Press-Releases/postcode-lottery-in-long-covid-will-exacerbate-health-inequalities-say-nursing-leaders;

A21 www.educationotherwise.org/resources/template-letters;

A22 batemanhornecenter.org;

A23 https://doctorswith.me/international-consensus-primer-for-medical-practitioners/

A24 Currently, little research has been conducted on this aspect of Long Covid. Post-Exertional Malaise (PEM) is the defining characteristic of ME so if PEM is present then ME is present. Adult figures of incidence of Long Covid form of ME (c.69%) may well apply. At the very least the lowest figure found in adults (10%) is likely to apply. See https://www.medrxiv.org/ content/10.1101/2020.12.24.20248802v1