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    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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Search results

  1. Michiel Tack

    ME/CFS skeptic: a new ME/CFS research blog

    Thanks for the feedback. I hope to reclaim the name 'skeptic' from those who use to be dismissive of certain ideas, often with a righteous tone. I see skepticism more as trying to figure out what makes sense or not, challenging different claims to see what holds up after closer scrutiny. More...
  2. Michiel Tack

    ME/CFS skeptic: a new ME/CFS research blog

    Hi, I'm an ME/CFS patient from Belgium who make summaries of and critical commentaries of ME/CFS research (examples are this post on virology blog or this article on Simon Mcgrath's blog). I've now made a new website for my comments on and summaries of ME/CFS research. My latest article is an...
  3. Michiel Tack

    'See ME': a song and video for ME/CFS patients worldwide

    This song and video was created by the Belgian artist and ME/CFS patient Robin De Man and his son Seppe. It commemorates the millions who have disappeared from public life and were forced to live an isolated life between four walls because of ME/CFS. The song is a cover of Chasing Cars by Snow...
  4. Michiel Tack

    European ME Coalition (EMEC)

    The advocacy group of Evelien Van Den Brink and Francis Martin (of which I’m part) now has an official name and website. Check it out here: https://europeanmecoalition.wordpress.com/ For those who might not remember, this is the group that has submitted the successful European petition for...
  5. Michiel Tack

    ME awareness hour

    It's MEawarenesshour again today. Last week the hashtag was trending in the UK. Patients could see it on number 24 in the trending list on their Twitter account.
  6. Michiel Tack

    ME awareness hour

    It’s MEawarenesshour tonight at 8PM London time. Hope you can all join us. Some patients counted the number of tweets per MEawarenesshour and it seems that we’re getting bigger and stronger every week. Hope to break a new record tonight!
  7. Michiel Tack

    NIH Intramural study update

    Thanks for the update. Really hope a sufficient amount of patients will apply to participate. This seems like one of the most important studies into ME/CFS ever.
  8. Michiel Tack

    ME awareness hour

    A bit of encouragement: last week #MEawarenesshour made it Top 100 Twitter Trend Charts in UK. Hope we can do better each week.
  9. Michiel Tack

    ME awareness hour

  10. Michiel Tack

    ME awareness hour

  11. Michiel Tack

    ME awareness hour

    Patients made some beautiful posters to raise awareness:
  12. Michiel Tack

    ME awareness hour

    It's ME awareness hour tonight at 8PM London time on Twitter! Hope you can all join us. I suspect many patients will like the experience because there's a feeling of brotherhood and a connection with other patients, a bit like when you go to an actual demonstration.
  13. Michiel Tack

    ME awareness hour

    I would like to invite all ME/CFS patients here on Phoenix Rising to join us on Twitter for ME awareness hour. Every Wednesday at 8 PM London time, patients from all over the world join forces to raise awareness of ME/CFS by simply tweeting about it, using the hashtag #MEawarenesshour. The...
  14. Michiel Tack

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by Open Medicine Foundation, sign up here! Sept 7th 2019

    I've written a short summary/impression of the 2019 OMF Symposium. I hope it will be helpful for patients who were unable to watch. Please be mindful that this summary is based on watching the livestream yesterday. So there could be some errors or missing parts. If you want to know something...
  15. Michiel Tack

    Comment by 'Michiel Tack' in 'It'd be great if research funds could be set up in more countries, either as part of existing groups, stand-alone or affiliates of other charities'

    In Belgium, we're currently working on something like that, a fund for ME/CFS research that will organize events and actions to raise money. In the past, I have helped out with patient organizations to make the case to politicians that we need more biomedical research, that the GET/CBT...
  16. Michiel Tack

    Comment by 'Michiel Tack' in 'How I lost 70 lb / 32 kg / 5 st while ill with (severe) ME/CFS'

    I found it funny rather than disgusting.
  17. Michiel Tack

    The Cochrane correspondence

    I don't know who leaked the emails, but in the email exchange, Tovey mentions that they were leaked. He writes:
  18. Michiel Tack

    The Cochrane correspondence

    References I received the email exchange documents through Kalliope, a member of the Science for ME forum and MARIT @MEMHJ, whose Blog gives an interesting overview of this subject. [1] Cochrane Library: an improved online platform to guide health decision-making across the world. August 8...
  19. Michiel Tack

    The Cochrane correspondence

    The Cochrane correspondence The Cochrane review on exercise therapy for patients suffering from chronic fatigue syndrome has been the subject of ongoing controversy. In October 2018, a Reuters news article suggested that Cochrane would temporarily withdraw the review due to pressure and...
  20. Michiel Tack

    The Cochrane correspondence

    The Cochrane review on graded exercise therapy (GET) is one of the most cited and referenced resources to justify this treatment for ME/CFS patients. The review is currently under review and has been the subject of much controversy. A publicly released email exchange gives an interesting insight...
  21. Michiel Tack

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Thanks Jeff. I appreciate you having a look at my concerns. I'm glad that some neurosurgeons are trying to decrease the complications of this type of surgery for example by no longer using rib harvest. I do not think however that it's best to eliminate the information about these complications...
  22. Michiel Tack

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    This is what the scientific literature says. I haven't found any credible publication that shows or even suggests that CCI can cause ME/CFS symptoms, let alone that it would relieve those symptoms. A lot of ME/CFS patients are reading Jeff's and Jennifer's blog post and wonder whether they...
  23. Michiel Tack

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    An average of 5 years. I would argue if you don't see improvements in fatigue, IBS etc. 5 years after surgery, then it's unlikely that that surgery will cause improvements after those 5 years.
  24. Michiel Tack

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I would immediately like to add some caveats to the information I posted above: A) I am obviously no expert in these complex surgical procedures and it's possible that there are some inaccuracies in the text above. I simply did some research and read some studies. I hope the information I...
  25. Michiel Tack

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    References [1] Ashafai NS, Visocchi M, Wąsik N. Occipitocervical Fusion: An Updated Review. Acta Neurochir Suppl. 2019;125:247-252. [2] Bobinski L, Levivier M, Duff JM. Occipitoaxial spinal interarticular stabilization with vertebral artery preservation for atlantal lateral mass failure. J...
  26. Michiel Tack

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Concerns about craniocervical instability surgery in ME/CFS CCI/AAI has little in common with ME/CFS Three ME/CFS patients, Jeff, Jennifer, and Matt, have reported spectacular improvements of their ME/CFS symptoms following surgical interventions for craniocervical instability (CCI) and...
  27. Michiel Tack

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I've collated some info about craniocervical instability (CCI) surgery which I posted yesterday on a blog post on the S4ME forum. I would like to share it here on Phoenix Rising as well, as I understand not all follow both forums. I have some concerns about this surgery in patients with ME/CFS...
  28. Michiel Tack

    Central sensitization: a matter of concern

    Central sensitization: a matter of concern In 1981 Wilbert E. Fordyce challenged conventional wisdom. In one of the most influential findings in modern pain research, he reported a negative relationship between exercise and pain [1]. A subsequent study by Steven Linton confirmed these results...