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  1. Seanko

    UK NICE Guidelines to be reviewed

    ICYMI The UK NICE guidelines are to be reviewed after months (years!) of campaigning by patients. NICE Guidelines Review CG53 The reason for its importance is that we have a public health service in th UK (NHS) so decisions about recommended treatments are made at a national level. This has...
  2. Seanko

    Jarred Younger on MEpedia

    I am updating Jarred Younger's profile on MEpedia. Health Rising has been an important source of news about Jarred's work Jarred Younger on MEpedia We want to get the information correct so that patients & journalists can read about his studies. Is there anything we could add to make the page...
  3. Seanko

    Cartoon on ME (fabulous)

    The best thing I have seen as part of ME Awareness Day is a cartoon by Laura Chambelain. It can be found on her blog and vividly depicts the life and struggles of somebody with ME/CFS. The M.E. Adventures comic: energy and exertion #MEawareness...
  4. Seanko

    Date somebody with ME

    In the Guardian newspaper as part of Me Awareness Day, there is an an anonymous article on why people with ME are the ideal people to date! Why not date someone with ME? We’re tough survivors My partner listed my chronic fatigue syndrome as a reason not to be with me. But my illness is not who...
  5. Seanko

    #meawarenessday

    It's the 12th May & it's ME Awareness Day. There are lots of interesting things going on around the world, to get a flavour why not head over to Twitter & the ##meawarenessday hashtag ME Awareness Day on Twitter You do not need to have a Twitter account to have a browse.
  6. Seanko

    Walk for ME 2016 (update)

    A while ago I posted about Walk for ME which is raising money for the British charities ME Research UK & Invest in ME. So far £7 250+ (around US$10 500) has been raised :) My own walk takes place tomorrow: Thursday 12 May Team Walk for ME Seanko's Walk for ME...
  7. Seanko

    Telomere shortiening (Elizabeth Unger)

    Dr Elizabeth Unger & colleagues at the CDC in Atlanta have published a paper on Telomere shortening in ME/CFS in the FASEB biology journal Telomere Length Analysis in Chronic Fatigue Syndrome Below is a readable summary from ME Research UK Telomere Shortening Telomeres are ‘caps’ of DNA...
  8. Seanko

    Nigel Speight petition to GMC

    As you may be aware, British paediatrician Nigel Speight has been effectively barred on practising with ME/CFS patients or giving talks on the subject by the General Medical Council (GMC). A petition has started at #MEAction to reverse the decision...
  9. Seanko

    Resource Evidence ME/CFS is not psychological (video)

    A very good resource for patients are the series of videos on produced by the Dutch ME/Society Wetenschap voor Patienten - ME/cvs Vereniging (Dutch ME/CFS Sociiety on YouTube) The latest instalments come from psychiatrist Dr Neil Harrison of Sussex University. In them he discusses what is...
  10. Seanko

    Age & Illness Duration in Chronic Fatigue Syndrome

    Julia Newton & Leonard Jason along with colleagues in Norway have published a new paper on age & illness duration in ME/CFS in diagnostics. The Relationship between Age and Illness Duration in Chronic Fatigue Syndrome Download as PDF file Elizabeth Kidd 1 Abigail Brown 1Stephanie McManimen...
  11. Seanko

    Call for Research Applications (MERUK)

    ME Research UK have put out their latest call for research applications. Call for Research Applications (MERUK) 2016 Call for applications for ME/CFS research funding 2016 The principal aim of ME Research UK is to commission and fund scientific (biomedical) investigation into the causes...
  12. Seanko

    ME Patient: What I'm really thinking...

    The British newspaperthe Guardian has published a piece on as part of their series "What I'm really thinking..." on ME. What I'm really thinking: the ME Patient "I have myalgic encephalomyelitis. If you think it is hard to say, try living with it every day. Yes, I understand that your...
  13. Seanko

    Meet Dr Sarah Knight (ME/CFS paediatrician)

    ME Australia have published an interview with Dr Sarah Knight, a paediatrican working on ME/CFS at Murdoch Childrens Research Institute at The Royal Children’s Hospital in the University of Melbourne. Her work is partially funded through ME Research UK...
  14. Seanko

    Dr Mark Vink's critique of PACE

    You may recall @Cort wote a piece on Dr Mark Vink a physician on Holland with ME/CFS who was conducting his his own research on ME/CFS. He has written a new paper on the problems with the British PACE trial and its of of CBT/GET as treatments for the illness. He compares the PACE trial with a...
  15. Seanko

    Walk for ME 2016

    During ME Awareness Week 9-16 May 2016, patients, friends and family of ME sufferers will be doing a sponsored walk, run or swim to raise money for the British ME Research charities Invest in ME & ME Research UK under the banner of Walk for ME 2016 Walk for ME has had walkers, runners and...
  16. Seanko

    Recommended Gut Biome Book (II)

    Earlier today I posted information about Giulia Enders’ book: the Gut, the inside story of our bodies most under-rated organ. https://d.gr-assets.com/books/1418765290l/23453100.jpg A publication which goes into more detail on the gut biome & illness is the Good Gut by Justin & Erica...
  17. Seanko

    Best seller on Gut (Biome)

    One of the more interesting best-sellers of recent years in Europe has been Giulia Enders' book on the Gut: Gut: The Inside Story of Our Body's Most Underrated Organ https://d.gr-assets.com/books/1435168687l/23013953.jpg She is a Phd student in gastroenterology, who has completed her medical...
  18. Seanko

    Positive story in UK Press

    The British newspaper the Guardian has published a positive ME/CFS story by David Cox featuring comment from Jose Montoya (Stanford University) & Mady Hornig (Columbia University). Is chronic fatigue syndrome finally being taken seriously? Jose Montoya was a trainee doctor when his...
  19. Seanko

    Immune System 101

    The human immune system is rather complicated! So where do you start if you want to know more? Have a go with Crash Course, a series of educational videos hosted on Youtube. There are three 10 minute videos looking at different aspects of immunology. The first is below. They are good but maybe...
  20. Seanko

    CMRC 2016: First details

    First details of the CMRC conference at the end of September 2016 have emerged. It it will take place on the 28 & 29 of September at the Novotel Hotel in Newcastle. https://www.actionforme.org.uk/resources/questions-and-answers/2016-cmrc-conference/ The first day of the conference is open to...

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