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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2nd November 2017 monthly meeting with Nutritionist, Karen Scobie

For the November meeting, Nutritionist, Karen Scobie will be in attendance to give advice on diet and nutrition while allowing those attending the opportunity to share their food experiences. Please come along to meet Karen and share what has worked and any ideas you may have to make things better for your own care and that of others. Tea and coffee will be available, as always.  Please feel free to bring any other drink or a biscuit or snack.  Come for as much or as little of the meeting as you can cope with. The meeting will be held in the Midsteeple in the centre of Dumfries High Street.  Entry

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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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Members Feedback Questionnaire 2017

We wish to thank all DGMEFM Network members who completed the members feedback questionnaire. Feedback Aims: To be able to target our energy, time and resources on the things that matter most to members; Make informed funding applications; and Speak confidently on members behalf with Health and other organisations about the effect of ME/CFS and FM. Following the cut off date Friday 25th August 2017, we had received 43 completed returns (23 electronically and 20 on paper).  As a thank you for taking the time to complete the feedback, everyone who completed a return was entered into a prize draw. Prize Draw Results: 1st Prize – £50 Brian Conchie 2nd

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DGMEFM Network AGM

The AGM will take place on 5th October 2017 in the meeting room at Midsteeple Box Office, Dumfries from 1pm to 2pm. Entry is through the blue Box Office door.  We use the first floor meeting room and there’s full disabled access using the lift (press and hold the button). Agenda: Welcome Chairman’s Report; including approval of Trustee Annual Report Treasurer’s Report; including approval of Audited Annual Accounts and election of Independent Examiner Dissolution & Election of Committee Election of Committee Members Committee Members (minimum of 5, maximum of 15) should be able to communicate either through Facebook or e-mail and be available to attend Committee meetings at least three

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