M.E. Awareness 2020

Dialogues for a neglected illness – or Dialogues for ME/CFS is a new project being made with an award from the Wellcome Public Engagement Fund. More information here. The project will consist of a website with a collection of about a dozen new short videos, accompanied by links to existing educational and reference material. It will create a vivid, multi-faceted picture of ME/CFS, covering different aspects of the disease from a variety of perspectives, which will include – diagnosis; various management and treatment issues; Severe ME and the support doctors can provide; key symptoms described by patients in their own words –short and long term experiences and differing severities; patient advocates’ concerns; and the broader historical, social, medical and cultural context for the disease. It will create a resource which patients can use to help their doctors and other health, education and research professionals understand more about this disease and the issues faced.

http://www.dialogues-mecfs.co.uk/films/severeme/

ME Awareness 2020

More than 21,000 Scots suffer from ME which is also known as chronic fatigue syndrome

Scottish ministers are being  urged to withdraw a controversial treatment that is prescribed on the NHS to treat myalgic encephalomyelitis (ME) but is blamed for leaving many victims housebound or crippled

https://www.thetimes.co.uk/article/me-sufferers-demand-end-to-exercise-treatment-9ncc9nw6n.

ME Awareness Day 2020

ME awareness day 2020

20 April 2020

Opposition to Oxford Health NHS Foundation Trust: “Coping with Coronavirus: Fatigue

Opposition to Oxford Fatigue Leaflet

COVID19 and the rights of disabled people

Very important. Please sign to protect the lives of disabled people. Let others see this post Click below where it says “view post” to see the full post and to access the link to read and sign the letter

“…………… However, we have read about cases that have made us feel worried that the principles on which the NHS are built are sometimes not being upheld. We are concerned that the rights of disabled people, of all ages, as set out in the Human Rights Act (1998), the Mental Capacity Act (2005), the Adults with Incapacity (Scotland) Act (2000), the Equality Act (2010) and the United Nations Convention on the Rights of Persons with Disabilities (2006) and the Convention on the Rights of the Child (1989) are not always being upheld. NHS staff normally use these laws to help make decisions about people’s treatment. In this crisis it’s more important than ever that all NHS staff follow them………………..”

https://www.disabilityrightsuk.org/news/2020/april/covid-19-and-rights-disabled-people

This film will give you an introduction to PEM (Post Exertional Malaise). Once you’ve understood what PEM is about, you’ll know a lot more about the debilitating chronic

https://www.youtube.com/watch?v=TGIo1v7KVJQ&fbclid=IwAR3VuH_qFpiVica_SWGuIkBYZcjTVC1-tsZakZOgW78VKta0_l6nF9tiWv0

“Useful medical information when treating COVID-19 in patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) & severe fibromyalgia (FM)”

http://batemanhornecenter.org/wp-content/uploads/2020/03/Medical-Care-Considerations-Letter-Final.pdf

LETTER TO SEND TO SHOPS TO HIGHLIGHT ISSUE OF SHOPPING PROBLEMS

I have an illness known as M.E. (Myalgic Encephalomyelitis): this is described by the W.H.O. (World Health Organisation) as a neurological diseasei, making it similar to illnesses such as Multiple Sclerosis, Motor Neuron Disease and Parkinson’s.

The NHS is mandated to implement M.E. as a physical, neurological disease.

letter to shops for sufferers

Letter sent to major supermarket chains and UK Government from UK ME charities and the All Party Parliamentary Group on ME

Template letter to MP

Coronavirus Bill could leave thousands of Disabled people without support

The bill potentially poses a serious risk and can put the wellbeing of many at real danger.  We ask you to write to your MP immediately.

https://www.inclusionlondon.org.uk/campaigns-and-policy/act-now/coronavirus-bill-could-leave-thousands-of-disabled-people-without-support/

Dr BM Carruthers et el’ Research
Wendy Boutilier·Friday, 3 January 2020·
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Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, Staines D, Powles AC, Speight N, Vallings R, Bateman L, Baumgarten-Austrheim B, Bell DS, Carlo-Stella N, Chia J, Darragh A, Jo D, Lewis D, Light AR, Marshall-Gradisnik S, Mena I, Mikovits JA, Miwa K, Murovska M, Pall ML, Stevens S. J Intern Med. 2011 Oct;270(4):327-38. doi: 10.1111/j.1365-2796.2011.02428.x. Epub 2011 Aug 22. Review. Erratum in: J Intern Med. 2017 Oct;282(4):353. PMID: 21777306 Free PMC Article Similar articles Select item 5697392
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Walsh GC, Carruthers BM, Seraglia M, Olson M. J Lab Clin Med. 1968 Nov;72(5):836-41. No abstract available. PMID: 5697392 Similar articles Select item 6040430
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CARRUTHERS BM, COPP DH, MCINTOSH HW. J Lab Clin Med. 1964 Jun;63:959-68. No abstract available. PMID: 14179131 Similar articles Select item 14144541