So Michelle has been on her holidays which means this months (September 2016) Facebook update blog is from your network secretary, Kim.
I am sure you are all pleased to see our September Newsletter, available at; http://18.104.22.168/~dgmefm/wp-content/uploads/2016/09/Newsletter-2016-September.pdf. Thank you everyone who contributed to this edition. If you have a story about your illness that you feel happy to share, please get in touch by emailing us at; email@example.com.
Membership to the charity is free but we have overheads to cover like the cost of producing the newsletter, if you wish to make a donation you can do so by visiting our donations page; http://dgmefm.org.uk/donations/. Another way to help raise funds for the charity is for you to consider using the easyfundraising page when shopping online, check out; http://www.easyfundraising.org.uk/d/1t61dq4i/
Articles / Blogs
- A team of researchers from America claim to have found a unique “chemical signature” which may provide early diagnosis for Chronic Fatigue Syndrome (CFS), read more at: https://inews.co.uk/essentials/news/health/chronic-fatigue-syndrome-identified-blood/
- The paper ‘The Core Problem in Chronic Fatigue Syndrome Identified? Naviaux’s Metabolomics Study Breaks Fresh Ground’ got a few of our Myalgic Encephalomyelitis (ME) / CFS members excited and is well worth a read, the paper is available at; http://www.healthrising.org/blog/2016/09/01/metabolomics-naviaux-chronic-fatigue-syndrome-core-problem/
- The ME Association posted the following conclusions and recommendations from one of their leaflets, available at; http://www.meassociation.org.uk/shop/management-leaflets/cognitive-behaviour-therapy/ The following is an extract of their post; We conclude that CBT in its current delivered form should not be recommended as a primary intervention for people with ME/CFS. However, our results did indicate that, when used appropriately, the practical coping component of CBT can have a positive effect in helping some patients come to terms with their diagnosis and adapt their lives to best accommodate it. CBT was also seen to have a positive effect in helping some patients deal with comorbid issues – anxiety, depression, stress – which may occur at any time for someone with a long-term disabling illness. The ME Association are really good at posting information on their Facebook page, which you can access at; https://www.facebook.com/ME-Association-171411469583186/?hc_ref=NEWSFEED&fref=nf. Another post shared was supported by a leaflet on relapsing; http://www.meassociation.org.uk/shop/management-leaflets/relapses-exacerbations-flare-ups/
- The 10 signs and symptoms of Fibromyalgia was posted; http://uscurecenter.com/10-signs-and-symptoms-of-fibromyalgia-you-should-know/. The paper reports ‘It is a disorder of the muscles, joints and fibrous tissues. People often describe it as a state of feeling perpetually sick.’
- A blog on ‘What it’s really like to suffer from Chronic Fatigue Syndrome’ was posted, see link; http://www.telegraph.co.uk/women/health/my-life-got-taken-away-from-me—what-its-really-like-to-suffer/?WTmcid=tmgoff_soc_spf_fb&WT.mc_id=sf35135539. The blogger, Hannay who is 29, housebound and living with her retired parents who act as her careers, writes a blog to keep her friends updated while also giving advice to fellow sufferers and their families. Hannah even made a tiny version of herself in doll form to go to events like weddings and birthdays that she couldn’t attend due to her illness. I am sure a lot of us can relate to either not being able to attend events or attending them only to be left with 3-5 days worth of recovery so Hannay’s idea of a doll sounds lovely and does get the message out there that although she would love to be there, she physically and mentally is unable to. Kaye Adams (TV & radio presenter) read a number of excerpts from Hannay’s blog on her programme aired on 7th; http://www.meassociation.org.uk/2016/09/kaye-adams-gets-stuck-into-m-e-on-her-bbc-radio-scotland-show-this-morning-7-september-2016/
- The Secretary of State for Health was asked whether hyperbaric chambers would be made available on the NHS for Fibromyalgia patients, see the question and response at; http://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Commons/2016-07-06/42093 (Please note this is relevant to NHS England)
- A short YouTube video where Dr Hilary talks about Fibromyalgia; https://m.youtube.com/watch?v=zfb1DfsYVBk&feature=youtu.be
- A keyring card with the wording ‘My ability to speak coherently is temporarily missing. Please try again later.’ was posted. Other keyring cards are available at; http://stickmancommunications.co.uk/
- A post on a new model for fibromyalgia (FM) aimed at providing a rational explanation for the patients’ symptoms and help communicate between patients and doctors was shared. The model also aims to motivate patients to engage in lifestyle changes that can improve disease outcomes, the post is available at; http://fibromyalgianewstoday.com/2016/09/07/new-model-explaining-pain-fibromyalgia-improves-lifestyle. The study relating to this ‘Explaining unexplained pain to Fibromyalgia patients: finding a narrative that is acceptable to patients and provides a rationale for evidence based interventions’ is available to read at; http://bjp.sagepub.com/content/10/3/156.full.pdf
- Queen Mary University of London (QMUL) has released the PACE data to a patient who requested it under the Freedom of Information Act, as ordered by a recent tribunal, to read; http://www.meaction.net/2016/09/09/qmul-releases-pace-data/
- The latest publication from Action for ME, titled ‘Experiences of people in Scotland living and learning with M.E.’ is available at; https://lookaside.fbsbx.com/file/AfME%20Taming-the-gorilla.pdf?token=AWyF3p-yLZcmi5UAHwAedCsq7Clhj2roIWXODjCkXlaQXzFWjbx2q85f1c_VwBlEaMrAWkDCEwBYknUt318PAevnERDaOn2va4pYL2SdJaePVmSPvrcNNf0aybyTwGX2n_ZUNkKLzZp46qwIJ9GY1RcQ
- A ‘Milk Protein Intolerance in ME/CFS’ articles was shared, available at; http://www.prohealth.com/library/showarticle.cfm?B1=FACEBOOK&utm_source=facebook&utm_campaign=facebook_article_cfs&libid=29373
- A new report on the wider use of cannabis is was shared, available at; http://www.meassociation.org.uk/2016/09/mea-welcomes-new-report-that-supports-the-use-of-medicinal-cannabis-13-september-2016/
- The blog ‘Having Fun While Chronically Ill’ was shared; https://themighty.com/2016/08/why-i-wont-apologize-for-having-fun-while-sick/. I personally like the quote the reader used; Eleanor Roosevelt once said: “Do what you feel in your heart to be right – for you’ll be criticized anyway”.
- DG Voice will be having their annual conference called ‘Disability in the real world’ on 9th November, further info at; https://www.eventbrite.co.uk/e/dg-voice-conference-disability-in-the-real-world-tickets-26919063644?aff=eac2
What have our members been discussing, including support to them
- Members discussed how they got tired after eating and how the body uses a lot of energy to digest food which may explain this increased fatigue.
- The benefits of vitamin B injections was discussed, with one member explaining a slight easing of their limbs, slight energy lift and a marginal benefit to cognitive function. The member wished to note that others who tried the injections found no benefits.
- The varying effects of Amitriptyline was discussed. Amitriptyline is a tricyclic antidepressant which at low doses has been found to be effective to relieve chronic (long-term) pain. It relaxes muscles and potentially improves sleep that’s being disturbed by pain.
- Nausea was discussed with members offering advice on medication some were taking that helped and the benefits of ginger by another member, the following link was also provided; http://www.fibromyalgia-symptoms.org/fibromyalgia_nausea.html. This discussion soon lead to one where members voiced their frustrations at having problems with sleeping and a complete inability to do routine things round the house like cleaning with the added frustration that family members don’t understand the debilitating nature of their illness. Apparently a cleaning fairy would at least help, an idea I am sure we would all agree with, as long as they were silent as noise is our enemy. Progressing on from this discussion, a post on CFS as a form of hibernation was shared; https://www.washingtonpost.com/news/to-your-health/wp/2016/09/06/chronic-fatigue-syndrome-may-be-a-human-version-of-hibernation/?tid=sm_fb
- The question if it was safe to consume alcohol was raised, with the following link being provided; http://www.livingwithfibromyalgia.net/alcohol-fibromyalgia-can-you-drink/. Please remember to check with your GP if it is safe to take alcohol if you are on medication and remember we are all different and can be effected by alcohol, which is a toxin, differently.
- Medical ill health retirement and accessing work pensions was discussed by members, where advice was given to obtain as much evidence as possible in relation to your condition being permanent and that you wouldn’t recover from it.
- The benefits of acupuncture for relieving back pain was shared by a member with other members sharing how they had limited benefits of acupuncture in the past.
- Following the article on cannabis, the benefits of CPD vape pens was shared by some members.
- One member asked if others had tremors and muscle spasms which was identified as a symptom for others.
So that’s it for September, and hello to Autumn and Halloween. Gentle hugs to you all 🙂