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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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  1. Elliot

    What makes CFS such a hard-edged illness?

    I can't agree that CFS is much more unbearable than other illnesses. It is a horrible illness to have, but there are plenty of other illnesses that wreak havoc and destroy lives. It seems rather petty (not calling you petty- using it as a generalisation) to 'compare' illnesses. Each illness is...
  2. Elliot

    Lightning Process to be Evaluated in Research Study on Children

    Phil being a slippery eel as usual I see Also ME Agenda sorry for not replying to your correspondence via BS, been abit brain fogged recently. :Retro smile:
  3. Elliot

    Orthostatic symptoms predict functional capacity in CFS: implications for management

    I'm asking my ME specialist next time I see him if I can have a tilt-table test or something to see whether I have Orthostatic Intolerance. It's great to see that if I do, it's treatable and would hopefully improve my general ME! :)
  4. Elliot

    CDC doesn't study CFS much less XMRV

    Crikey that criteria is quite bare bones isn't it? (the CDC's) I fit into the canadian criteria and the cdc's but..a hell of a lot of people could be caught within the CDC criteria. Fatigue & one symptom sounds a bit inane.
  5. Elliot

    CDC lost the rest of its Credibility with the American public - GONE!

    How does the swine flu thing show the CDC negatively? The idea of the CDC is to prevent pandemics/epidemics from even occuring, which was why they hyped it up to be extra safe and to make people be more conscious of sneezing and such? I'm from the UK though so maybe I've missed something about them.
  6. Elliot

    How Much Compensation are we Due?

    *gets out umbrella* *dances in hell as it begins to rain*
  7. Elliot

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    "Annette Whittemore Andrea is the excited poster today . Sorry looks like there are embargo policies that need to be followed just like Science paper so I'm erasing anything to do with earlier info . But Hooray for Progress" Via facebook. See I was right about whether it would be correct...
  8. Elliot

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    And apparently the blood task force AAB [or whatever it is called] is holding a meeting on the 26th featuring a presentation on recent findings on XMRV. It's all looking up. I seriously can not believe I'm excited that I might have a retrovirus. But the possibility of getting treatment...
  9. Elliot

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Ah right I see :) thanks for the correction, got a little confused by brain fog. I agree again with you again kurt hah, would be nice for them to state it isn't official, unless they have and my brain has completely forgot. The joys of brain fog.
  10. Elliot

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Is it right for the WPI to leak information like this by the way? Just wondering as leaking a peers work sounds a little..yeah.
  11. Elliot

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Agreeing with Kurt, I got really excited but then saw that it has not been confirmed yet/papers have not been released. It's good to know they're in the reviewing process though finally. And if these leaks are true then it's great news for future potential treatments for us all! :) Lets just...
  12. Elliot

    ESME - The Most Effective Rated Treatments for Chronic Fatigue Syndrome - Norway

    Never thought about 'shielding', I just do it without noticing now, ie: I don't sit downstairs because a) going up and down the stairs is shattering and b) just having the extra noise of my family/the tv makes me crash/get overloaded. c) I close curtains most of the time because all the light is...
  13. Elliot

    Anti-XMRV Blog -New post

    Being a graduate usually entails a tad more qualification than a random nutter, though?
  14. Elliot

    Anti-XMRV Blog -New post

    ERV's profile: 'I'm a graduate student studying the molecular and biochemical evolution of HIV within patients and within populations. I also study epigenetic control of ERVs. '
  15. Elliot

    Anti-XMRV Blog -New post

    But I think what erv is trying to do is, even though she may come off as arrogant and condescending, is giving people the full information. People can chose for themselves, true, but they are not retrovirologists or doctors specialising in virology; how can they make a fully informed choice that...
  16. Elliot

    Anti-XMRV Blog -New post

    Compassion? Empathy? Concern for my fellow ME/CFS sufferers who are in a very dark place and reaching out to anything that could potentially make them better, whether that be from snake oil merchants or from unproven medicine. The side effects can be very serious, in regards to antiretrovirals...
  17. Elliot

    Anti-XMRV Blog -New post

    That is anectdotal evidence Daffodil, but I'm glad it is helping you. I'm assuming you're being supervised by a doctor throughout this, yes? And an excellent post Kelly :) As you said it's better to counter others opinions with facts and evidence, preferably scientific journals. It's a lot...
  18. Elliot

    Anti-XMRV Blog -New post

    Of course it's their life and their choice, I was not arguing that. Erv seems to be trying to explain the dangers and lack of scientific evidence to support taking antiretrovirals at the current moment. People under desperation can do really rash things. Some people may completely wish to take...
  19. Elliot

    Anti-XMRV Blog -New post

    But I think what erv is trying to explain is that there's not been a causation proven between XMRV and CFS, and also antiretrovirals are specially suited in dosage and such. Could you link to the study by John Coffin if possible where he said he would consider taking them himself? Sounds a...
  20. Elliot

    Anti-XMRV Blog -New post

    I don't see what is wrong with suggesting taking anti-retrovirals right now when there is no science to back up (yet) that they are effective is an attack? More of a wise decision? I get that people are desperate but taking anti retrovirals which have no evidence to show that they can get rid of...
  21. Elliot

    Am I the only one who hopes that XMRV is not the cause of CFS/ME

    I'm mixed on it to be honest. On one hand I'm reaching my seventh anniversary of having m.e/cfs. My health is just deteriorating more and more as the months go by (most of my seven years of having cfs/m.e were 'moderate'- past year has been moderate-severe) So I'm desperate for a cure or...
  22. Elliot

    Professor Simon Wessely & The Abused Child?

    I do hope you are not insinuating I've come on this forum to be a 'disturber of the peace' as well, hoMEy. :P I was just wanting people's take on it. Do you have any links to the video Joe? Or any accounts of it :) Thunderchat: We just had a huge thunderbolt here in Leicestershire..I don't...
  23. Elliot

    Professor Simon Wessely & The Abused Child?

    I wasn't speaking in definitives though hoMEy. Hello aswell! :)
  24. Elliot

    Professor Simon Wessely & The Abused Child?

    I don't know Joe, but one has to be careful not to throw 'troll' around to people who inquire or question. It can be construed as shouting down another, which isn't really the kind of welcoming and embracing nature of this forum! Thankyou for that report by the way, Ian :)
  25. Elliot

    A Moment of Reflection: Please Read!

    Hey Mithriel, my comment about the 'cost of cfs/me', was more to do with the lost money due to tax also, I can't get my head around why the government would want to put down hundreds of thousands of people who basically earn nothing, when if they were well, they could be earning much more and...
  26. Elliot

    A Moment of Reflection: Please Read!

    A fantastic post Ecoclimber, I too, am really worried about people with no retroviral markers taking really toxic things, it may be 'their body', but they are not doctors, or medical scientists and it'd be soul destroying in the long run if one had taken highly toxic antiretroviral drugs to find...
  27. Elliot

    Professor Simon Wessely & The Abused Child?

    Thankyou for all the links and such guys, really appreciated; posted this link so I could get a balanced view of things (here in the UK we have the Daily Mail which is the epitome of reactionary! Which has made me want to know all info before I make conclusions) It seems like Caroline...
  28. Elliot

    Professor Simon Wessely & The Abused Child?

    Thanks Sean, going to have a read of those now :)
  29. Elliot

    Professor Simon Wessely & The Abused Child?

    Exscuse me. I am not insinuating that the child was lying. I'm merely trying to give a balanced view of things showing the other side of the story, I read the link and it gathered evidence from unconnected hospitals that dealt with Ean (I think it's Ean? Brain's fuzzy) I apologise for wanting...
  30. Elliot

    Professor Simon Wessely & The Abused Child?

    Hey guys, I'm not sure if this has been posted before, apologies if it has and mods feel free to close it! I've been seeing a few videos and stuff about the young boy (Ean Proctor) from the Isle of Man who was apparently taken against his will from his parents due to his ME and subjected...