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  1. Ravn

    Is ME/CFS a form of Host versus Host disease?

    I’m looking for a simple, bordering simplistic, way of communicating the difference between autoimmunity and the host vs host concept. On the face of it both sound like cases of self attacking self Have I understood correctly that the key difference between the two is that in autoimmunity...
  2. Ravn

    Is ME/CFS a form of Host versus Host disease?

    Could this also explain painful nodes without swelling? I’ve never had a swollen lymph node in my life but the little devils sure know how to ache. My doctors have been supremely uninterested in anything not swollen so it must be a bit unusual? How does this line of thought align with the...
  3. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    This thing is seriously odd. ANZMES, as usual, are keeping their cards close to their chest so no way of knowing what’s really going on It’s fair enough that they would want to distance themselves from any incidents of harassment or trolling and remind people to behave civilly. But that could...
  4. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    Can’t remember the details now, the last round of feedback was months ago, but it was definitely argued that the headline should include ME or ME/CFS. IIRC there were comments on some of the OI management suggestions (no evidence) and the lack of info about severity, and probably a few more...
  5. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    Finally live, our national health authority’s updated public information on ME/CFS. Not perfect but quite passable overall (even though they ignored some feedback...)
  6. Ravn

    Is ME/CFS something to do with Butyrate?

    If it is true that people can live just fine without their microbiome producing butyrate that would point to one or more of three possibilities (that I can think of) there’s another currently unknown way of making butyrate in human cells; it seems unlikely the body would want to rely on butter...
  7. Ravn

    Is ME/CFS something to do with Butyrate?

    A bit of a sideline, just noting the involvement of iron in butyrate metabolism (HFE is one of the tier 1 candidate genes) As I understand it, iron status inside the gut affects how much butyrate bacteria produce. Butyrate levels, in turn, regulate iron metabolism. So it’s conceivable that HFE...
  8. Ravn

    Genetics: HFE

    Butyrate is being discussed in another thread. In this context it’s worth noting that iron is implicated in butyrate metabolism As I understand it, iron status inside the gut affects how much butyrate bacteria produce. Butyrate levels, in turn, regulate iron metabolism. So it’s conceivable that...
  9. Ravn

    DecodeME in the media

    So would it not be an option to add a donation link from the website to the university donation page for Chris’s team? Some people may prefer to donate directly to a university rather than via a charity and a link would make it much more obvious that this is an option. Also, unless you already...
  10. Ravn

    DecodeME in the media

    :thumbup: There doesn’t seem to be a link to the donation page from the new website? At least none I could see. Is that because the university doesn’t accept outside donation links (to AfME in this case)? Otherwise it would be good to have one prominently somewhere Earlier there was talk about...
  11. Ravn

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    Looks like it’s going to be a halfway house in NZ. Health professionals will continue to be able to access Cochrane , it’s just everyone else who won’t be able to see what health professionals are looking at...
  12. Ravn

    Do you have fever as a part of PEM?

    Measuring skin temperature doesn’t necessarily correlate with core temperature and there may be different mechanisms driving the two, so that needs to be taken into account when trying to interpret any results My own core temp (measured under the tongue) is invariably low at around 36.1-36.3°C...
  13. Ravn

    Genetics: HFE

    I’ve been doing a few cursory dips into HFE – and then lost all my open tabs, argh! So the following is based on a few saved notes and my unreliable memory, minus any sources (in other words, don’t trust anything I write here) Of course HFE may very well be just an accidental bystander in ME...
  14. Ravn

    Genetics: OLFM4

    Post sparked by this Microbe TV podcast: Immune cells eating other cells. No idea if it's remotely relevant but seeing OLFM4 is linked to neutrophils... One of the papers discussed in the podcast is about mast cells eating neutrophils and spewing bits of them out again after a delay of a few...
  15. Ravn

    Translating S4ME Fact Sheets into German

    That sounds fine to me but better leave the last word to the fluent speakers
  16. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    There seems to be a new script emerging in recent media stories about LP in NZ The old script was a version of this: I was terribly horribly ill, tried everything, nothing helped. Someone suggested the LP, I was very sceptical but had nothing to loose so tried it anyway. To my huge surprise...
  17. Ravn

    Translating S4ME Fact Sheets into German

    Would something like "in der Absicht, ihnen zu helfen" work better, or 'in einem Versuch'? (beware, my German is pretty rusty)
  18. Ravn

    Translating S4ME Fact Sheets into French

    I didn’t notice that sentence when comparing the two language versions, possibly due to brain overload, but reading it now in isolation, I think you’re right, the French version does sound a little more definite than the English one. Maybe replace ‘afin’ with ‘dans le but’? Only speaking for...
  19. Ravn

    After DecodeME - next steps for the ME/CFS community?

    I’d love to see a sort of centre of excellence in Edinburgh with lots of students under CP’s lead but that’d be a different strategy I was actually more thinking in terms of a ‘floating’ scholarship that people anywhere in the world can take to their local university to maximise the appeal, no...
  20. Ravn

    After DecodeME - next steps for the ME/CFS community?

    Thinking of ways of bringing the DecodeME data to the attention of as many researchers as possible, especially those currently outside the field I’m sure there’s some quiet shoulder tapping going on already but what more can we do? One, quite possibly mad, idea is to sponsor a national or...
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