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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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Search results

  1. searcher

    For someone in need of 23 and me, I have a $40 off voucher

    (Update: my discount code has been claimed. I will update this post if anything changes or if I get an additional code.) I also have a $40 off code that I'd be happy to share-- if anyone else is looking for one please message me and I will update this comment to let people know it's been claimed.
  2. searcher

    Google health recommends a psychologist and GET to treat CFS/ME

    CBT and GET have now been removed as treatments from the google health card in the US. There are still other sections that need to be changed (particularly the specialists section), but the card now says "There is no cure or approved treatment for this condition. However, some symptoms can be...
  3. searcher

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Maureen Hanson's group has funding for a brain imagining project but I don't think the other two do. From Cornell's press release:
  4. searcher

    low MMA, homocysteine, and GGT

    Hi methylation experts :) Does anyone have an idea as to what would cause my MMA, homocysteine, and GGT to be under the expected lab range? My doctor said he has only seen these results a few times out of thousands of tests he has run on patients, and is unsure if the results are likely to mean...
  5. searcher

    Please sign this petition to keep psychiatry out of the NIH study

    I just wanted to bump this as Mary and #MEAction would like to deliver it to NIH soon and it would be great to gather a few more signatures before submission.
  6. searcher

    Send your shoes to protest virtually for you in #MEAction's Millions Missing campaign!

    Hi @Justin30 - I helped out in the initial stages of discussion but unfortunately have not been able to be very involved since. Would you mind emailing your questions to the organizers at millionsmissing@meaction.net?
  7. searcher

    Send your shoes to protest virtually for you in #MEAction's Millions Missing campaign!

    Thanks @Sasha! A volunteer made some changes today so please let me know if it is clearer now-- I also found it to be confusing initially. We are so happy to see all of the enthusiasm! There are a lot of logistics to help out so we can use all the volunteers we can get. And it would be...
  8. searcher

    Updated NIH reponse to CFSAC recommendations

    Here are some clarifications from Vicky Whittemore, most of which we added to http://www.meaction.net/2016/04/07/nih-calls-for-additional-research-proposals-to-study-mecfs/ We asked about whether this program is primarily targeted at grants that were already about ME/CFS or targeted at new...
  9. searcher

    Angry Emails to the NIH -- Good or Bad? (Split thread)

    Don't worry, you don't have to convince me-- https://my.meaction.net/petitions/nih-put-me-cfs-patients-at-heart-of-research-design-process Carol has of course already spoken with NIH about Walitt and others, but I get what you are saying about them asking questions about specific researchers in...
  10. searcher

    Angry Emails to the NIH -- Good or Bad? (Split thread)

    You're welcome @Kati. I didn't want to talk about it publicly because I worried it would be conflated with the media manipulation against patients in the UK. But this really is very different-- no one at NIH is trying to portray patients negatively in the media (as far as I can tell.) There is...
  11. searcher

    Angry Emails to the NIH -- Good or Bad? (Split thread)

    I want to make clear that I don't think anyone at NIH asked us to rein in complaints. When I spoke once with Vicky I asked her offhandedly if she had gotten a lot of negative emails that go beyond criticism of the study design and she said she had, as have people at NIAID (I presume because of...
  12. searcher

    Angry Emails to the NIH -- Good or Bad? (Split thread)

    I have spoken a few times with Vicky at NIH and once with someone in communications at NINDS, but haven't spoken with anyone directly involved with the intramural study. My conversations were primarily about the NIH having more transparent, open communications with the community and about...
  13. searcher

    Updated NIH reponse to CFSAC recommendations

    No worries-- I think we are saying the same thing. We need new researchers, Centers of Excellence, and biomarkers. NIH seems to understand right now that they need to encourage new researchers to enter the field using mechanisms like RFAs, and it sounds like we will find out many more details in...
  14. searcher

    Updated NIH reponse to CFSAC recommendations

    "Pfizer Inc., the world’s biggest drugmaker, won a court ruling that will block generic versions of its No. 1 product, Lyrica, in the U.S. until December 2018. " http://www.bloomberg.com/news/articles/2014-02-06/pfizer-wins-ruling-to-block-generic-lyrica-until-2018 It's frustrating but drug...
  15. searcher

    Updated NIH reponse to CFSAC recommendations

    I agree that Roche should study Obinutuzumab on ME patients but that isn't something NIH can control, unless there is something I don't know? I am sure Roche has been considering it.
  16. searcher

    Updated NIH reponse to CFSAC recommendations

    I don't think it is due to law, but primarily due to cost, complexity, and tradition. A Phase III trial is incredibly large and expensive, and I doubt could be run solely out of the Clinical Center due to the number of people who need to participate. I think they are usually run out of multiple...
  17. searcher

    Updated NIH reponse to CFSAC recommendations

    Hi @Justin30 - Although I have stepped back from daily work, I can promise you that organizations are speaking with NIH about the urgent need for treatment trials. As I am sure you know, NIH said they were looking into doing Ampligen and Rituximab trials--...
  18. searcher

    NIH phonecall and Q&A, Tues 8 March

    As a follow up to Simon's post, I just started listening to a recording of the call (which I believe will be uploaded shortly.) Here is a quote from Francis Collins about RFAs toward the beginning of the call: "So, in addition, on the extramural side, a vigorous re-invigorated trans-NIH Working...
  19. searcher

    NIH phonecall and Q&A, Tues 8 March

    Thanks so much Denise, I have made those edits. I will be offline the rest of the day but someone will additional edits tonight if anyone sees anything glaring.
  20. searcher

    NIH phonecall and Q&A, Tues 8 March

    UPDATE: A full transcript of NIH's call is now available at http://www.meaction.net/2016/03/09/nih-telebriefing-update/ ------- I wasn't able to join the call but a participant who wants to stay anonymous took extensive, but rough, notes (basically a transcription) which are uploaded at...
  21. searcher

    Chance to participate in the Tuesday March 8th NIH telebriefing

    Someone wrote to ask and will update the community when he hears back.
  22. searcher

    NIH intramural research program update

    Good point Simon. I somehow forgot that everyone doesn't develop glandular fever/mono after EBV exposure. So presumably someone who had glandular fever/mono and recovered could be relevant, but it seems like that money would be better spent on studying more patients. Lyme just seems like an odd...
  23. searcher

    NIH intramural research program update

    I was really happy to wake up to the news on FMD controls and hope we will hear more news soon about other changes in response to patient feedback. I know that Vicky was also concerned from the beginning about FMD as a control group (she saw the protocol at the same time as all of us as she was...
  24. searcher

    Human endogenous retroviruses & neuro disorders - Avindra Nath publication

    I think it's also worth looking into Brigitte Huber's work. I am not sure if her lab at Tufts is still looking at the link between HERVs and CFS. Here is one grant she had looking at EBV, HERVs, and CFS: http://grantome.com/grant/NIH/R01-AR053821-05
  25. searcher

    NIH intramural research program update

    Have I ever said that he should be involved in the study? We are all demanding he be off the study. I find it useful to try to understand how decisions are made and how people end up in roles that they should not be in.
  26. searcher

    NIH intramural research program update

    I think being a lead clinical investigator is not a prestigious role as you don't have much control. Being the PI is much more prestigious and powerful. (edit: this was somehow misconstrued as me thinking he should be in this role. As I've said many times, I don't think he should be in this...
  27. searcher

    NIH intramural research program update

    My best guess is it came from http://me-pedia.org/wiki/Mark_Hallett as he is supposed to be an expert in FMD, but I genuinely don't for sure. NIH wrote back to our initial email over the weekend about Walitt. I expect there to be more responses forthcoming and I think there should be another...
  28. searcher

    NIH intramural research program update

    I just wanted to address one small item-- I don't know the latest status on this, but I wanted to mention that the NIH have said they are working on a Rituximab trial and I believe were speaking with the Norwegian team. I think we should push to get an update from NIH on those plans. Collins...
  29. searcher

    Investigating the Investigators of the Upcoming Post-Infectious NIH Study

    For those of you comfortable editing wikis and who want to help out, please help us make a lot of this information centralized at http://me-pedia.org/wiki/NIH_Post-Infectious_ME/CFS_Study#Investigators. We have been working on creating crowd-sourced wiki pages for all of the investigators. Some...
  30. searcher

    Our New NIH Clinical Investigator

    Hi Justin- I wanted to let you know that we are working on finishing a petition reconciling the different submissions we have received and are also writing the NIH directly about Walitt (and others with similar views.)