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

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  1. M

    Advocacy to governments: What is more likely to work?

    Hi Alex, I agree there are methodological problems with the analysis and that the true burden is almost certainly a lot higher. I understand they used to Wichita study is an indication of prevalence rates. Had this also been higher, the burden would have been much higher as well. But what is...
  2. M

    Advocacy to governments: What is more likely to work?

    No worries Kati, I only saw the petition you posted on another thread after I had posted above. I thought the petition is great, signed it too! Alex, the "Burden of Disease" study can be downloaded from the Australian Institute of Health and Welfare website at...
  3. M

    Advocacy to governments: What is more likely to work?

    Hi Kati, Have just seen this thread. I have been involved recently in some work in Australia, my thoughts are: * Understand the local politics in conditions, don't just assume that what is happening in your country is the same as everywhere else. There may be particular information to...
  4. M

    2002 paper: Physical or mental? A perspective on chronic fatigue syndrome [physical]

    Thanks Willow and Esther, these are a great read.
  5. M

    Horton v. Hickie

    Thanks Sean. I'm just releived it doesn't involve CFS!
  6. M

    Rates of psychiatric illness in CFS?

    @ oceanblue Yes, I agree much of Professor Lloyd's research has been very good for us and they have pointed to immunological factors (or in the case of Dubbo studies I thought brain injury). But he is a little confusing in that many of his public comments are pretty supportive of the CBT/GET...
  7. M

    Rates of psychiatric illness in CFS?

    Esther, a couple of points : 1) The link you have posted states: One of the strangest things I find about these approaches is that they concede the above point about heterogeneity but then proceed to diagnose/assess/treat it as one illness. The Australian GP guidelines do exactly the...
  8. M

    PACE Trial and PACE Trial Protocol

    Thanks dolphin for starting the other thread http://forums.phoenixrising.me/showthread.php?15645-PACE-Trial-summaries-critiques-links-thread-no-discussion-please. I have not followed the PACE trial as closely as I know many here have. But now I need to be on top of it, and it is beyond me to...
  9. M

    UK-Impact of CFS/ME

    Thank you Tom Kindlon for the excellent letter. And good points Alex. I had done some reading early last year on economic costs, including the US papers and an Australian one. Apart from loss of home duties costs, there are a whole host of other costs that tend to get left out of economic...
  10. M

    Nature: Lombardi XMRV Paper Retracted in Full

    I find it bizarre that Silverman retracted his part of the Science paper, and now the whole paper is retracted, but the original Urisman et al paper that identified XMRV the first time (in prostate cancer) still stands. Wasnt Silvermans work integral to that? As far as I can tell, the Paprotka...
  11. M

    Medical Research Council Announces ME/CFS Research Projects Worth 1.6m

    Any research into the biological mechanims of ME/CFS are of course welcome. But I notice the focus on 'fatigue' as opposed to PEM/PENE. Given that PEM is the signature symptom of ME/CFS, it is conspicuous in it's absence from the above studies.
  12. M

    CFS/ME - an apple/bannana? Says Michael Sharpe

    I have not followed UK ME/CFS as close as many here, but I find this apple/banana thread very interesting in the light of another report here recently on the CCC from Crawley/White/Miller...
  13. M

    Bond Uni grant update, maybe more $$ on the cards

    Wow, thanks Heaps, The Mason grant is fantastic, but it would be really great if they could get that state grant too! We deserve some government money in to this. Good to see State governments might help out.
  14. M

    Longitudinal study of glandular fever and CFS

    Does anyone have a full copy of this study? Does anyone have a full copy of this study they could PM me?
  15. M

    Could do with advice for a letter Im doing.

    Tania, It needs to be clearer what you have been diagnosed with (CFS) and what your limitations are. There is too much focus on the psychological consequences with not enough explaining why you need support services for your CFS. Do you have a doctor's letter or copy of medical records...
  16. M

    Could do with advice for a letter Im doing.

    Tania, It needs to be clearer what you have been diagnosed with (CFS) and what your limitations are. There is too much focus on the psychological consequences with not enough explaining why you need support services for your CFS. Do you have a doctor's letter or copy of medical records...
  17. M

    EBV in bone marrow of rheumatoid arthritis patients predicts response to Rituximab

    Good point. It would be interesting to know the status of other herpes viruses. But this study is very interesting given the context of the Norwegian study. It would be goog to know the EBV status (and other above viruses) of those that took part in the Norwegian group - I hope they are...
  18. M

    Failing to convince people

    I have been pondering some the same questions since I have been getting involved in a bit more advocacy myself. I am also still struggling with it, but a few thoughts: 1) Less is more - keep it brief and try and stick to the one or two most important points. Also remember that if you are able...
  19. M

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Great news to see this study! I really hope it attracts good scientists to look at CFS. After the XMRV letdown I was concerned that we would all be allocated to the back burner once again (or more like off the stove completely). But I do share the concern that some here have mentioned about...
  20. M

    VIPdx Statement from Vince Lombardi re: Testing

    I had a doctor explain to me that tests could be validated by testing the samples, sending them to another lab to be retested to see if they get the same/similar results. Maybe this happened between VIPdx and the WPI or between Redlabs and the WPI, or som other lab? Of course, as far as I...
  21. M

    Article: Re-inventing CFS- the International Consensus Criteria for ME: the Marj Van de Sande Interv

    Floydguy, I get your point, but on that basis everything in the ICC and CCC is subjective. I am commenting on the paper as published. I hope they do come up with objective testing. Perhaps the follow up papers will deliver that?
  22. M

    Article: Re-inventing CFS- the International Consensus Criteria for ME: the Marj Van de Sande Interv

    Thanks Cort for both of these articles - very informative. I hope the new definition works out (perhaps with a couple of minor adjustments). The need for narrower criteria for research is obvious. Though the paper indicates in places it is also a clinical definition (I hope that doesn't hurt...
  23. M

    UPDATE: BLOOD WORKING GROUP

    Couldn't agree more. One good thing about the retraction of the XMRV identification part of the paper, is it might allow more focus on other possibilities. And Lipkin's study sounds the right one to do that - I hope it still goes ahead. It has been evident for some time that the tests they used...
  24. M

    Live chat about xmrv tomorrow

    Also, another similar point I haven't seen raised anywhere. As far as I understand it the original Science paper did 2 types of PCR test: 1) the single round PCR on the 11 patients shown in Figure 1 (now withdrawn by Silverman and the WPI). 2) the nested PCR, on which the 67% positive figure...
  25. M

    Live chat about xmrv tomorrow

    FancyMyBlood, I agree with you. The evidence has been mounting against XMRV for some time. But at the end of the day if there is something else cross reacting with out blood that is not XMRV, then that is just as important that this is explained. It is frustrating that so many scientists...
  26. M

    Kathleen and Alan Light get 1 million dollars for research

    It would not surprise me if this does run in families, my mum has FMS and I have CFS. But I also think that someone with one of these illnesses is far more likely to be properly diagnosed if a first order relative already has it, since that will have already heightened awareness of the...
  27. M

    UK-Impact of CFS/ME

    Spot on Laurie, Definitely something wrong here. Economic costs associated with ME/CFS are in the billions. Any report quoting 'millions' simply has to be wrong.
  28. M

    Osler's Web by Hillary Johnson

    Hi guys, I'm reading it too. Good luck Francelle with 6 weeks! I've had it a few months now and am still finding it a challenge (could have done with a wee bit of editing if you ask me). It is interesting to read about the history of all the characters who are still part of the story. I am...
  29. M

    Nk cell defiency syndrome, mm looks alot like cfs/me to me.

    Thanks heapsreal for keeping us informed of the Bond uni research. It seems to be the most exciting thing happening here at the moment. Do you know the difference between the NK cell tests they are doing and those that have been done/developed elsewhere, eg those by Nancy Klimas or Dr...