Reference Lists and Further Reading

Reference List (Modules One and Two)

Action for ME (2016) An Employer’s Guide to ME, available from https://www.actionforme.org.uk/uploads/pdfs/employers-guide-to-me-booklet-2016.pdf

Carruthers, B. M. MD, CM, FRACP (C) & Van de Sande, M.I. B ed.(eds) (2012), International Consensus Primer For Medical Practitioners, International Consensus Panel, available from http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

Chu, L., Valencia, I.J., Garvert, D.W., Montoya, J.G. (2018), Deconstructing Post-Exertional Malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Patient-Centred, Cross-Sectional Survey, PLOS ONE, available from: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0197811

Cleare, A. J. et al (2015). Chronic Fatigue Syndrome, BMJ Clinical Evidence, 1101. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4585442/

Everyone Matters (2013), The World of One Room: Jessica’s Story, YouTube url – https://youtu.be/4AkStAwGQck

Hissa, R. (1990), Central Control of Body Temperature: A Review (abstract) Arctic Medical Research, Jan: 49 (1): 3-15. Available from – https://www.ncbi.nlm.nih.gov/pubmed/2180414

Horst, K. R. (eds)(1990)  Vertigo and Associated Symptoms, Clinical Methods: The History, Physical, and Laboratory Examinations, 3rd Edition. Chapter 123. Boston, Butterworths, available from https://www.ncbi.nlm.nih.gov/books/NBK228/

Hummingbirds’ Foundation for ME https://www.hfme.org/meoutbreakscause.html

Hunter, R.M., Paxman, J., James, M., (2017) Counting the Cost, The Optimum Health Clinic, Available from https://www.theoptimumhealthclinic.com/wp-content/uploads/2017/09/Counting-the-Cost.pdf

Jason, L. PhD, (2019) CDC Empirical Case Definition and Prevalence of CFS, International Association for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis. Available from – http://iacfsme.org/ME-CFS-Primer-Education/Pages/CDC-Empirical-Case-Definition-and-Prevalence-of-CF.aspx

Klimas, N. MD, (2014) M.E./C.F.S. Diagnosis and Name, C.F.S. Knowledge Center Inc. YouTube – https://youtu.be/c2vIQ92wU9Y

McEvedy, C.P. BM, Beard, A.W. BM, (1970) Royal Free Epidemic of 1955: A Reconsideration, British Medical Journal. Available at –  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1700894/pdf/brmedj02268-0019.pdf

M.E. Association, (2019) Seven Key Symptoms for Making a Diagnosis of ME/CFS. Available from https://www.meassociation.org.uk/about/the-symptoms-testing-assessment-mecfs/#Part%201

M.E. Association, (2019) Symptoms, Testing and Assessment https://www.meassociation.org.uk/about/the-symptoms-testing-assessment-mecfs/

M.E. Association (2017), Pace Trial – the making of a medical scandal, Press release: Journal of Health Psychology, Special Issue on The PACE Trial, Vol. 22, No 9, Aug. 2017. Available from https://www.meassociation.org.uk/2017/07/the-pace-trial-the-making-of-a-medical-scandal-29-july-2017/

M.E. Association (2011) Disability Scale (downloadable pdf) https://www.meassociation.org.uk/wp-content/uploads/2012/02/MEA-Disability-Rating-Scale.pdf

ME/CFS Foundation SA https://www.mecfssa.org/node/27 (Retha Viviers quote: Whatsapp conversation between Stripy Lightbulb Managing Director Sally Callow and Retha Viviers.)

ME Research UK (2019) Available from – http://www.meresearch.org.uk/what-is-me/

Montoya, J. Dr. (2018), Solve MECFS Initiative, Dr Jose Montoya on Believing ME/CFS patients, YouTube  https://youtu.be/4wA-ywBA3Xc

Newton, F. Dr. (2017), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Fact Sheet: Educational Implications, https://www.omf.ngo/wp-content/uploads/2017/09/ME_CFS-School-Fact-Sheet-Final-Educational-Implications.pdf Delaware State University.

Nimmo, S., (2018), Boost for people with  ME and Chronic Fatigue Syndrome, thanks to Parliament, https://meaustralia.net/2018/05/09/boost-for-people-with-me-and-chronic-fatigue-syndrome-thanks-to-parliament/amp/ Also available from  https://www.s4me.info/threads/australia-boost-for-people-with-me-and-chronic-fatigue-syndrome-thanks-to-parliament.4018/

Nova Southeastern University, (2019)  https://www.nova.edu/nim/clinic/dr.-nancy-klimas-bio-page.html Florida.

The Open Medical Foundation (2018) – https://www.omf.ngo/mecfs-and-pediatrics/

Shepherd, C., Dr. (2017) NHS Choices, YouTube – https://youtu.be/hLeDEgo6Pd0 Available from: https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

Stewart, J.M. MD, PhD. (2013) Common Syndromes of Orthostatic Intolerance Available from Pediatrics. 2013 May; 131(5): 968–980 Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3639459/

Swift, P. (2015) US NIH Report Calls For UK Definition of ME/CFS to be Scrapped, The Argus Report, available from http://theargusreport.com/us-nih-report-calls-uk-definition-mecfs-scrapped/

Twitter – @EmergeAus https://twitter.com/EmergeAus/status/1100888041613221888

Williams, M. (2015), Re:The long wait for a breakthrough in chronic fatigue syndrome. The British Medical Journal, BMJ 2015; 350:h2087. Available from – https://www.bmj.com/content/350/bmj.h2087/rr-6

Younger, J., (2018), The Open Medical Foundation, How brain inflammation causes ME/CFS, YouTube https://youtu.be/8XrdSlpUQTE

UK Parliament, House of Commons Hansard (2019) Appropriate ME Treatment https://hansard.parliament.uk/commons/2019-01-24/debates/FA1BBC27-37A7-4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment

World Health Organisation (2016) What are neurological disorders?  https://www.who.int/features/qa/55/en/

World Health Organisation (2016) G93.3 classification https://icd.who.int/browse10/2016/en#/G93.3 ICD: 10 version:2016

World Health Organisation (2019) Health Statistics and Information Systems Available from https://www.who.int/healthinfo/global_burden_disease/metrics_daly/en/

Valdez, A.R. et al (2019), Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning, Frontiers in Pediatrics, available from https://www.frontiersin.org/articles/10.3389/fped.2018.00412/full

Younger, J., (2018), The Open Medical Foundation, How brain inflammation causes ME/CFS, YouTube https://youtu.be/8XrdSlpUQTE


Module three

Business

Action for M.E. (2016) An Employer’s Guide to M.E. Pgs 14-15. Available from https://www.actionforme.org.uk/uploads/pdfs/employers-guide-to-me-booklet-2016.pdf

Campbell, B,. Finding Your Energy Envelope Part 1, ME/CFS & Fibromyalgia Self-Help. Available from http://cfsselfhelp.org/library/finding-your-energy-envelope-part-1  March 2019

Hunter, R.M., Paxman, J., James, M., (2017) Counting the Cost, The Optimum Health Clinic, Available from https://www.theoptimumhealthclinic.com/wp-content/uploads/2017/09/Counting-the-Cost.pdf

Legislation.gov.uk,  Equality Act 2010 Available from http://www.legislation.gov.uk/ukpga/2010/15/schedule/1
Miserandino, C. (2003), The Spoons Theory, https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Healthcare

M.E. Association, Government-Funded ME/CFS trial ‘One of The Greatest Medical Scandals of 21st Century’. 20 February 2018. Available from https://www.meassociation.org.uk/2018/02/government-funded-me-cfs-trial-one-of-greatest-medical-scandals-of-21st-century-20-february-2018/

NHS, Overview: Chronic Fatigue Syndrome (CFS/ME) Available from – https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/ Last reviewed 2017

Parliament.live.tv. Westminster Hall: ME Debate, https://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:01:20&out=11:31:59 20 February 2018

White, P. Prof. et al., Comparison of Adaptive Pacing Therapy, Cognitive Behavioural Therapy, Graded Exercise Therapy and Specialist Medical Care for Chronic Fatigue Syndrome (PACE): A Randomised Trial, The Lancet, Vol. 377, Issue 9769, p. 823-836, 2011. Available from https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext

Education

Action for M.E. An Employer’s Guide to M.E. Pgs 14-15. Taken from https://www.actionforme.org.uk/uploads/pdfs/employers-guide-to-me-booklet-2016.pdf

Action For ME, (2017) Families Facing False Allegations, Results of Action For ME’s Survey, available from https://www.actionforme.org.uk/uploads/pdfs/families-facing-false-accusations-survey-results.pdf

Gov.uk, Illness and Your Child’s Education Taken from https://www.gov.uk/illness-child-education March 2019
Newton, F. Dr., (2017), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Fact Sheet: Educational Implications, Delaware State University, available from https://www.omf.ngo/wp-content/uploads/2017/09/ME_CFS-School-Fact-Sheet-Final-Educational-Implications.pdf

NHS, (March 2019) Overview: Fabricated or Induced Illness, available from https://www.nhs.uk/conditions/fabricated-or-induced-illness/

Rowe, P.C. et al (2017) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Diagnosis and Management in Young People: A Primer. Frontiers in Pediatrics, available from https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full


Recommended Further Reading and Resources

Torjesen, I. (2018), Pressure rows on Lancet to review ‘flawed’ PACE trial, The British Medical Journal:BMJ 2018;362:k3621 , available from https://www.bmj.com/content/362/bmj.k3621

Open Medical Foundation, M.E./C.F.S. and Pediatrics Resource link – https://www.omf.ngo/mecfs-and-pediatrics/
Solve MECFS Initiative – Resources for healthcare providers. Available from  https://solvecfs.org/research/resources-for-healthcare-providers/

Tuller, D., M.E./C.F.S: Virology Blog, Available from http://www.virology.ws/mecfs/ Includes articles about the PACE trial.

Unrest film, YouTube trailer – https://youtu.be/JvK5s9BNLzA. Directed by Jen Brea. Full length documentary available on Netflix, Vimeo and some libraries.

Voices From the Shadows film and resources website – http://voicesfromtheshadowsfilm.co.uk/ Content not suitable for children.


A selection of M.E./C.F.S. charities

Cure M.E. https://cureme.lshtm.ac.uk/ – UK

The ME Association https://www.meassociation.org.uk/ – UK

The Open Medical Foundation https://www.omf.ngo/ – USA

Emerge Australia https://emerge.org.au/ – Australia

MECFS Foundation SA https://www.mecfssa.org/ – South Africa