• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Seanko

    Comment by 'Seanko' in 'Fighting CFS with "Good " Gut Bacteria'

    The gut biome is a fascinating topic. Whether it has an direct impact on the causes ME/CFS remains to be seen. it could be that major illnesses have an input the gut flora which then feed back into making symptoms worse. The results of the Lipkin/Hornig stidy at Columbia are eagerly anticipated.
    • Seanko
    • Blog entry comment
  2. Seanko

    Today, Thursday 15 Oct: Solve webinar with Dr Alan Light: New Developments in ME/CFS Research

    As a taster, check out Dr Light's videos on YouTube for the Dutch ME/CFS Society (ME/cvs Vereniging) on YouTube
  3. Seanko

    Comment by 'Seanko' in 'Fighting CFS with "Good " Gut Bacteria'

    There was an interesting BBC programme last year about the gut biome & allergies. Worth watching. http://www.dailymotion.com/video/x24td4u_horizon-2014-2015-allergies-5-modern-life-and-me_news
    • Seanko
    • Blog entry comment
  4. Seanko

    Comment by 'Seanko' in 'Fighting CFS with "Good " Gut Bacteria'

    Been using probiotc yoghurts for about a year after reading about Dr Lipkin's research at Columbia University. In that time my condition has improved, difficult to tell whether it is down to better pacing or the probiotics. I do not have any control me to judge myself against :P
    • Seanko
    • Blog entry comment
  5. Seanko

    Newcastle ME/CFS Centre of Excellence

    ICYMI there was an article in the Newcastle Chronicle about the Newcastle Centre of Excellence for ME/CFS which is overseen by Prof Julia Newton. Major new NHS medical alliance aims to put North East at centre of pioneering research
  6. Seanko

    UK: ME patient and pharmacist wants your input for AfME pharmacists' guide

    @Sasha Emily has a very good blog, with lots of resources for UK based patients. She was a medical student when she became ill with ME/CFS and was undiagnosed for many years. She later trained to become a pharmacist whilst ill. She is one of the nicest people I knwo within the British ME/CFS...
  7. Seanko

    Newcastle Memories

    With the CMRC conference taking place in Newcastle, it has brought back quite a few memories from the my days as a student there. So hearing about the research of Prof Julia Newton makes makes me proud to be have an alumnus of that great university. I studied at the University from 1988 to...
  8. Seanko

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    Sonya made the right call. No point in being bogged down in the CBT/GET minefield. Questions are about the presentations taking place today
  9. Seanko

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    Sonya is extremely hard working & conscientious. She does a lot of work behind the scenes & does not get the credit she deserves.
  10. Seanko

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    Sounds like he is a researcher on the program blowing his own trumpet ;)
  11. Seanko

    Sleep: Neurobiology, Medicine, and Society *Free course*

    Anybody doing it?
  12. Seanko

    Sleep: Neurobiology, Medicine, and Society *Free course*

    The course started last week. Not got round to logging in yet
  13. Seanko

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    The hashtag to follow on Twitter is #cmrc2015
  14. Seanko

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    Well done to Sonya Chowdhury & Action for ME for the tweeting and streaming
  15. Seanko

    NHS in the UK asking for the public to submit suggestions of illnesses to be researched

    @Apple don't worry, just brain fog,it happens to us all. There is no real right or wrong answer :) If your first research request os to look into studying buomarkers associated Post Exertional Malaise (PEM), the outcome could be measuring hormones after a period of activity over a few days and...
  16. Seanko

    NHS in the UK asking for the public to submit suggestions of illnesses to be researched

    You can find some background & discover what other people have written on the blog below. Help Shape research in the NHS The author Emily is well versed in the politics of the NHS.
  17. Seanko

    Agents for Change: The 10th Invest in ME International ME Conference, 2015 - Part 1

    @Mark Thanks for the report @Sasha I can feel your optimism from here
  18. Seanko

    Autumnal gloom or not...

    We have not had much of a summer in Southern England this year, just a lot of greyness and chilliness. With August departing the nights have getting progressively longer at an accelerating rate. Last week, I recognised that I had became increasingly sleepy. The hormone flows which affect your...
  19. Seanko

    Comment by 'Seanko' in 'The Joys of Forums'

    You may also like this... http://www.thedailymash.co.uk/news/society/someone-always-has-to-be-difficult-confirm-scientists-2014102191927?utm_content=buffer73f07&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
    • Seanko
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  20. Seanko

    Is Science becoming too hard even for scientists?

    Like Stephen Pinker's phrase "'professionalism narcissism' :) On a lesser scale you get it on Phoenix Rising with people posting unintelligible papers claiming they understand them. When I lived in Spain, I taught English to a medical lecturer. My duties were to talk mostly about football &...
  21. Seanko

    How Do You Handle Autumn?

    Differences of opinion based in latitude :) Low light in autumn & winter is a problem for those of us living at higher latitudes: Northern Europe, Northern USA & Canada.The contrast is all the more because summer days are long & winter ones so short So how do people deal with the seasonal...
  22. Seanko

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    @Scarecrow it sounds like we have a lot n common. You know the UK research scene better than me. Are there any good scientists who you would like involved on the relevant CMRC & MRC committees?
  23. Seanko

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    @Wildcat the composition of the CMRC maybe is not ideal. it has changed. Peter White has left. You may remember that Mady Hornig started off her research career as a "psychiatrist" yet this has not stopped her doing ground breaking research with a multi-disciplinary team at Columbia University...
  24. Seanko

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    @Scarecrow I've been living with ME/CFS for 34 years, most of the time undiagnosed. GPs have tried to say I was depressed and I argued with one for 30 minutes to get a sick note with ME/CFS on it rather than depression. I know all about the frustration of relapses and wondering if I will ever...
  25. Seanko

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    @Scarecrow lol. I did see your Jonathan Edwards passage but fogot about it. Was having a chat with somebody online about the CMRC today, hence the post earlier. I registered for the event today and will go health permitting. Hopefully be a good chance to meet various people I've chatted to...
  26. Seanko

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    Glad you support the CMRC. It is a good initiative with lots of good people involved. Sometimes you have to deal with people whose views you may not agree with. I understand that Jonathan Edwards was amongst those to attend last year.
  27. Seanko

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    It should be remembered Drs Fluge & Montoya are world class researchers...should we dismiss their contributions. Obtaining the support of the Medical Research Council (MRC) is the key to obtaining proper funding for ME/CFS research in the UK. @Wildcat How would you persuade the MRC to fund...
  28. Seanko

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    I can't see many people wanting to abuse Drs Fluge or Montoya. :P If I met them I'd prefer to say, "Well done old chap, carry on with your excellent work."
  29. Seanko

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    Registration for Associate Members of the CMRC is now open for the sessions on Tusday 13 october 2015. Attendance is free if you fill in the membership form Registration page CMRC Assocaite Membership Form For more information email AfME at research@actionforme.org.uk *Please note: by...
  30. Seanko

    Lizzie Guntrip: Conservation & ME/CFS advocacy

    There are many people doing marvellous work to raise the profile ME/CFS. One such individual is Lizzie Guntrip who is a young naturalist who promotes access to wildlife for the sick & disabled in Britain She has appeared on the BBC's Springwatch programme and was featured by the Royal Society...