The 25% ME Group is a unique nationwide charitable organisation managed mainly by volunteers (most of whom are severely affected by M.E.). It was set up to offer support services to those severely affected by M.E. and their carers. www.25megroup.org
Here is a tribute to Ian Rudd, written by his cousin Tom Anderson. Ian died from M.E. in 2018 (article printed by the 25% ME Group, Issue 46 Winter 2018). tribute Ian Rudd
Severe M.E. sufferers may also find the following information site helpful: www.hfme.org The Hummingbird site is the hard work of severe sufferer Jodi Bassett. Tragically, Jodi passed away at a young age in 2016, but leaves behind a wealth of fantastic information about M.E., including ideas for treatment. She was an artist who lived in Australia.
Another group for severe M.E. sufferers is Stonebird http://www.stonebird.co.uk/ founded by Greg and Linda Crowhurst from Norfolk, England. It focuses on educating and campaigning for the truth of severe M.E. There is an inspiring prayer page which can be downloaded for free http://www.stonebird.co.uk/prayer/prayer.html. They have produced groundbreaking literature on caring for severe M.E. sufferers: Care for Someone with Severe Myalgic Encephalomyelitis and Severe M.E. Notes for Carers, both by Greg Crowhurst.
The registered charity MCS-Aware has very good support for those suffering from multiple chemical sensitivity, electro-sensitivity, food intolerance and mould sensitivity. (NB: The Grace Charity for M.E. does not endorse some of their CFS/ME links.) www.mcs-aware.org MCS Aware, 56 Gaping Lane, Hitchin, Herts. SG5 2JE
The best medical guidelines to date are probably the Canadian Guidelines (published in 2005) and the new International Consensus Criteria for M.E. (published in 2011). The Canadian Guidelines have been sent to every GP surgery in Kent and Medway. Check that your GP has a copy. The Canadian Guidelines can be obtained in hard copy via the charity Invest in M.E. (see our page Practical Guidance). The hard copy of International Consensus Criteria for M.E. can be obtained from us, The Grace Charity for M.E. Alternatively, these booklets may be downloaded via the links below:
Canadian Guidelines: http://www.investinme.org/Documents/PDFdocuments/Canadian_ME_Overview_A4.pdf
International Consensus Criteria for M.E.: http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf
There is an international lobby based in the USA called #ME Action. www.meaction.net
Pippa Stacey has a helpful website for those suffering from a chronic illness. Pippa, an M.E. sufferer in Yorkshire, has written a survival guide for university students with a chronic illness. https://www.lifeofpippa.co.uk
In order to contact your MP about M.E., you can find out who they are and their contact details at www.parliament.uk. Enter your postcode in the Members & Staff page. Or phone (0207) 2194272.
LAW CHANGE ON DONATING BODY ORGANS
This is especially important should an M.E. sufferer wish to donate their organs for scientific research on M.E. They will need to register an opt out decision with the link below.
In the past people had to opt in to donate their organs after death. This law has already changed in some parts of the UK and is set to change in England by May 20th 2020 and in Scotland by March 2021. The change in law is that the UK will have ‘deemed consent’ from all inhabitants to donate their organs to the NHS after they die UNLESS they opt out of this. So, unless you register to opt out, the NHS could consider taking your organs. If you don’t wish to leave your organs to the NHS for whatever reason, you need to record an Opt-Out decision on the NHS Organ Register indicating your wish. Either call the NHS Organ Donor Line on 0300 123 23 23 or visit www.organdonation.nhs.uk
You are also recommended to tell your family about your wishes: it’s always best to have your wishes in writing.