May 2018 Facebook Blog

The following is a summary of relevant article/research links provided in May by Facebook members.  Links to all the items are included, just click on the article name, word ‘link’ or ‘article’ to open. Articles / Blogs Lower regulatory frequency for postural control in patients with fibromyalgia and chronic fatigue syndrome ME Awareness Week: BBC Newsbeat Documentary Missing the fizz: my long battle to understand the mysteries of ME This is why exercise can’t cure illness ‘ME Awareness Week 2018’ New Early Day Motion Launched by Carol Monaghan MP ‘Urgent change’ needed to improve lives of ME sufferers On Saturday ‘millions’ of ‘missing’ people will reappear for the day ME

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April 2018 Facebook Blog

The following is a summary of relevant article/research links provided in April by Facebook members.  Links to all the items are included, just click on the article name, word ‘link’ or ‘article’ to open. Articles / Blogs Hope for an ME/CFS Autoimmune Subset: A German Researcher Steps Forward ‘Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture’. Daughter died aged 21 after illness some experts don’t believe is real left her bed-bound and wasting away Music 4 M.E Possible causes of medically unexplained symptoms Trinity College: New research network will bolster our understanding of Chronic Fatigue Syndrome | 31 March 2018 Progress in

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March 2018 Facebook Blog

The following is a summary of relevant article/research links provided in March by Facebook members.  Links to all the items are included, just click on the article name, word ‘link’ or ‘article’ to open. Articles / Blogs BBC ‘Why do we know so little about ME?’. The Scottish Government is developing an Action Plan for Neurological Conditions.  The Alliance Neurological Programme and Neurological Alliance of Scotland created a survey to obtain patient and carers experiences. The survey closed on 29th March. ME / CFS patient Post exertional malaise avoidance toolkit. Read about Lizzie Mooney who is 12 years old who has been sick for the past three years with ME. Trial

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February 2018 Facebook Blog

The following is a summary of relevant article/research links provided in February by Facebook members.  Links to all the items are included, just click on the article name, word ‘link’ or ‘article’ to open. Articles / Blogs Personal Independence payments: All 1.6 million claims to be reviewed. Oscar-nominated film director in ME plea to MSPs. BBC Radio Scotland: ME – The Invisible Disease. Brainwaves on ME. A story of confusion, misunderstanding, misdirection, misdiagnosis and misery. Lady Gaga halts tour for a second time due to ‘severe pain’. Medically Unexplained Symptoms – A Practical Guide. Trial By Error: Letter to British Journal of Sports Medicine from CPET Experts. Rethinking the treatment

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December 2017 – January 2018 Facebook Blog

I am not sure if you will agree but for me December and January are always the most physically and mentally challenging months to manage my chronic illness due to the additional festive pressures, increase of bugs/viruses to catch and lack of daylight.  To ensure you don’t miss out on all the great links posted, I have therefore combined the two months. The following is a summary of relevant article/research links provided over these two months, provided by Facebook members.  Links to all the items are included, just click on the article name, word ‘link’ or ‘article’ to open. Articles / Blogs Antibiotics Might Be Stopping Immune Cells From Working

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November 2017 Facebook Blog

The following is a summary of relevant article/research links provided this month by Facebook members.  Links to all the items are included, just click on the article name, word ‘link’ or ‘article’ to open. Articles / Blogs How Ketogenic Diets Curb Inflammation in the Brain. New Scientist: Blood cells in chronic fatigue syndrome are drained of energy. Metabolomics Study Points Finger at Energy Production in Fibromyalgia. For those looking for support to help them stay in work: link. Fibromyalgia and Gastroesophageal Reflux Disease Are Linked. Fibromyalgia Tied to Hysterectomy, Gynecologic Disease. Trial By Error: The Surprising New BMJ Best Practice Guide. Massage technique ‘speeds up’ diagnosis of chronic fatigue illnesses.

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October 2017 Facebook Blog

For those of you looking for advice on diet and nutrition, you may wish to attend the 2nd November Monthly Meeting Our AGM on 5th October was not well attended.  Thank you to the 4 members that Craig (Chairperson) contacted by telephone on the day to agree to their proxy vote being used to allow the AGM to meet quorum of 10 members. The following is a summary of relevant article/research links provided this month by Facebook members. Links to all the items are included, just click on the article name, word ‘link’ or ‘article’ to open. Articles / Blogs The Future Learn course, ‘The role of personal assistants in

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October 2017 – Easyfundraising and donations update

We are very grateful to all of our members who are helping us in one way or another towards meeting our costs.  Gift Day donations and standing orders, plus Easyfundraising and Gift Aid payments in August and September amounted to £624. Figures for October 2017: Easyfundraising raised £6.74 (funds are transferred quarterly) Gift Day one-off donations – £375 Weekly/Monthly donations, direct payments to bank – £12 Sale of KJ jewellery – £26 Gift Aid via mydonate – £5 Gift Aid claim on other eligible donations yet to be submitted This is the link for Easyfundraising and our cause: link Thank you Paul – DGMEFM Network Treasurer

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September 2017 Facebook Blog

The 5th October meeting will start with our Annual General Meeting (AGM).  We need a minimum of 10 members to attend for this please. Articles / Blogs Metabolic switch may bring on chronic fatigue syndrome, article .  ‘The team is now conducting a large trial in Norway of the cancer drug rituximab, which destroys the cells that make antibodies, in people with CFS.  Results are expected next year.’ Lady Gaga was taken to hospital in ‘severe pain’ cancelling her Rock In Rio appearance. Shortly afterwards she confirmed she has Fibromyalgia, forcing her to reschedule her European leg of her tour, BBC article.  For those of you with Netflix, her documentary, Gaga:

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August 2017 Facebook Blog

As we enter September there is a definite nip in the air.  If like me you find your body thermostat is wonky, the start of the cold weather will hit you hard, so try and remember to layer up. Thank you to all the members who completed our survey which will help us focus our own depleted energies on the things that you have shared matter to you.  We really do appreciate the time you put in completing this survey as we understand how difficult completing the simplest of tasks can be. The 7th September meeting has the theme of Medications and Supplements.  Come along and share what works for

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