• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. Simon

    DecodeME: Take Part in the World's Largest Genetic Study into ME

    Hi BrightCastle I'm part of the DecodeME team and want to clarify that we are simply asking for a diagnosis of ME or CFS - we don't specify any criteria for the healthcare professional diagnosis. If a doctor or other healthcare professional has told you that you have ME or CFS, you qualify to...
  2. Simon

    DecodeME: Take Part in the World's Largest Genetic Study into ME

    Thanks for posting. This is a great chance to take part in a study, though for reasons including cost, it will aim to recruit from within the UK (though go international if needed).
  3. Simon

    The best evidence yet that immune system problems can cause ME/CFS? Simon M blog

    Not heard of that rule but bear in mind that a) ME/CFS may well have many causes - it's unlikely that 80% of people with the illness will have any factor. b) Genetic studies are providing small clues (though causal ones) and this only looked at one part of the immune system. A more comprehensive...
  4. Simon

    The best evidence yet that immune system problems can cause ME/CFS? Simon M blog

    Certainly it will only explain a minority. But this is only looking at one part of the immune system. The proposed GWAS will look across the whole genome and hopefully find more genetic links. As the blog says, it won't be one gene (version) causing the illness, as in cystic fibrosis. but...
  5. Simon

    The best evidence yet that immune system problems can cause ME/CFS? Simon M blog

    The best evidence yet that immune system problems can cause ME/CFS? Human leucocytes Antigen (HLA) proteins play an essential role in helping the immune system to recognise pathogens. This new research is easily the best study yet of HLA alleles (gene variants) in ME/CFS. It finds links...
  6. Simon

    The coronavirus report behind the big shifts in policy by UK and US governments (Simon McG blog)

    This is the imperial college report https://www.imperial.ac.uk/media/imperial-college/medicine/sph/ide/gida-fellowships/Imperial-College-COVID19-NPI-modelling-16-03-2020.pdf
  7. Simon

    The coronavirus report behind the big shifts in policy by UK and US governments (Simon McG blog)

    The coronavirus report behind the big shifts in policy by UK and US governments (Simon McG blog) Until very recently, the US and UK governments were taking a relatively gentle approach to controlling the new coronavirus epidemic – compared with most other governments around the world. A very...
  8. Simon

    Sign up! Your support could help win funding for a game-changing ME/CFS study (Simon McGrath's blog) NEW ACTIVE LINK ADDED - OPEN TO ALL THE WORLD

    Thanks to Mary for posting, and apologies for being slow getting here (few health issues going on...). Yes, people outside the UK can back it - though the study will start recruiting in the UK only and then expand to countries outside the UK if needed. Meanwhile, here's a bit of the blog...
  9. Simon

    Nanoneedle update: finding what's in the blood

    Thanks so much for this incredibly helpful and detailed update from Ron.
  10. Simon

    Ron Davis latest: more evidence of "something in the blood" (Simon McG blog)

    Note that Janet @Rose49 has posted an excellent note from Ron on the latest on the nanoneedle and efforts to find "something in the blood" here
  11. Simon

    Ron Davis latest: more evidence of "something in the blood" (Simon McG blog)

    Latest from Ron Davis: more evidence of "something in the blood" © Mark Tuschman (with thanks for his permission to use here, and to @Rose49 for arranging it) More clues are pointing to a role for blood plasma in ME/CFS. At a recent talk, Ron Davis presented data showing that...
  12. Simon

    Researchers propose deep trawl of DNA to help uncover the causes of ME/CFS (Simon McG blog)

    Researchers propose deep trawl of DNA to help uncover the causes of ME/CFS Analysing the DNA of thousands of patients can help to uncover the genetic roots of diseases and shed light on the underlying biological mechanisms. This can reveal targets for drug development. A new and very different...
  13. Simon

    Something in the blood (the ME/CFS effect?) Simon McGrath blog

    Something in the blood It is remarkable that four independent groups have now found that a factor in the blood can affect cell metabolism/mitochondria in ME/CFS and transfer the effect to healthy cells. Here is a summary of the provisional findings. Fluge & Mella The first to find the effect...
  14. Simon

    A brightening future: the state of ME/CFS research (Simon McG blog)

    A brightening future: the state of ME/CFS research - ME/CFS Research Review Although there are no treatments for ME/CFS on the horizon, things are looking up thanks to recent findings and a substantial increase in the amount of high-quality research. The field still needs much more funding...
  15. Simon

    Significant association of DNA variants with self-reported ME/CFS (Chris Ponting blog)

    New blog at ME/CFS Research Review Guest blog by Professor Chris Ponting and colleagues. Summary A new analysis using data from UK Biobank indicates that one version of a particular gene increases the risk of ME/CFS in women. The gene codes for a transporter protein in the mitochondrial...
  16. Simon

    The heart of the matter? Lipkin’s Collaborative probes post-exertional malaise (Simon McGrath blog)

    The microbiota is made up of bacteria but also viruses and fungi and Lipkin is is looking at all of them.
  17. Simon

    The heart of the matter? Lipkin’s Collaborative probes post-exertional malaise (Simon McGrath blog)

    working link for this: http://bit.ly/2KQHuCrysB https://www.facebook.com/topmecfsresearch/posts/526898891098399
  18. Simon

    The heart of the matter? Lipkin’s Collaborative probes post-exertional malaise (Simon McGrath blog)

    Part 2 of the blog about Dr Ian Lipkin's Collaborative, now up at ME/CFS Research Review The heart of ME/CFS? Lipkin’s Collaborative probes the impact of exertion The hallmark symptom of ME/CFS is post-exertional malaise (PEM), a prolonged, grim and disproportionate response to exertion. While...
  19. Simon

    The microbiome hypothesis: Lipkin's collaborative, part 1 (Simon McGrath blog)

    https://www.facebook.com/topmecfsresearch/posts/498137053974583
  20. Simon

    The microbiome hypothesis: Lipkin's collaborative, part 1 (Simon McGrath blog)

    New blog at ME/CFS Research Review The microbiome hypothesis: Dr Ian Lipkin's collaborative, part 1 A gut reaction is the problem in ME/CFS – that’s the main idea being pursued by Dr Ian W. Lipkin of the Center for Infection and Immunity at Columbia University. He believes that the body’s...
  21. Simon

    Analysis of data from 500k people in UK Biobank shows inherited component to ME/CFS (Ponting blog)

    With GWAS, researchers are looking at the whole genome , with hundreds of thousands of possible genetic changes. That dramatically increases the chance of false positives, so very big samples are needed to generate robust results. Davis is focusing on a handful of genes, so much smaller sample...
  22. Simon

    Analysis of data from 500k people in UK Biobank shows inherited component to ME/CFS (Ponting blog)

    To get robust results for a GWAS takes around 10k patients, so I wouldn't read anything into this study. In the early days of GWAS, studies used samples in the hundreds or low thousands of people. The results turned out to be just a lot of noise, and the field moved on. Maybe a sample of 5k...
  23. Simon

    Ron Davis’s big immune study is looking at HLA (WTF?) genes. Here’s the story. [blog]

    New blog at ME/CFS Research Review Dr Ron Davis has won a large NIH (US National Institutes of Health) grant for an immunology project with a strong focus on HLA genes. Which may have led some to wonder, ‘What are they?’ HLA (human leukocyte antigen) molecules play a critical role in the...
  24. Simon

    Analysis of data from 500k people in UK Biobank shows inherited component to ME/CFS (Ponting blog)

    It’s complicated! Normally, it’s not as simple as one gene defect causes disease, particularly as people tend to get it later in life, rather than from birth. What these types of studies tend to throw up, I understand, is genes that individually have a small effect. Things get interesting...
  25. Simon

    Analysis of data from 500k people in UK Biobank shows inherited component to ME/CFS (Ponting blog)

    Guest blog by Professor Chris Ponting and colleagues at ME/CFS Research Review UK Biobank - a national biobank different from the ME/CFS biobank - has data from around 500,000 individuals, including both healthy people and those with one or more of the many different diseases in the UK...
  26. Simon

    Ponting's plan to replicate Mark Davis’s remarkable Me/CFS immune activation findings (Simon's blog)

    Full blog A team led by Edinburgh University’s Professor Chris Ponting has won funding for a PhD student who would follow up and expand on remarkable recent findings made at Stanford University where Dr Mark Davis may have pinpointed a major issue in the immune system in ME/CFS. Last year...
  27. Simon

    C-Reactive Protein Response in Patients With Post-Treatment Lyme vs ME/CFS

    That’s been a pretty consistent finding over the years. Whatever is going on in ME/CFS is more subtle than simply CRP-related information. E.g. the T cell clonal expansion found by /Mark Davis (still to be published)
  28. Simon

    There’s a yawning gap in ME/CFS research funding. Take action.

    Take action Even from your bed Solve ME/CFS Advocacy day 15 May #MillionsMissing protests 12 May Find a protest in a city near you. Donate USA Open Medicine Foundation. Solve ME/CFS initiative UK Action for ME. Invest in ME research. ME Association. ME research UK ... Things won’t change...
  29. Simon

    There’s a yawning gap in ME/CFS research funding. Take action.

    One for ME Awareness week There’s a yawning gap in ME/CFS research funding. Take action. When I got ME more than 20 years ago, I thought that science would soon provide the answers to my illness. Instead, I saw little good research going on, and there’s been a spectacular lack of progress...