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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

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    Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)

    I am really amazed that the pure announcement of an online CBT trial (???) gets this much media attention. Normally the media reports actual results after a study is finished or they might cover a trial before it has even started because the scope or trial design is so innovative. Not the case...
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    How I found the underlying cause of my CFS--anti NMDA antibodies

    Hi Shawn, great story, thanks for sharing. Could you say how long the benefits of the plasmapheresis did last? In which intervalls did you have to repeat the procedure? Thanks!
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    Poll: Have you received autonomic testing for OI (POTS, NMH, etc.) symptoms

    I had good testing but so far nothing has worked for me (Florinef, salt, Propranolol, Ivabradine, Midodrine). I had a positive QSART test and I am waiting now for the results of my skin biopsy. I wonder if anybody here with confirmed autonomic neuropathy received any kind of...
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    Insomnia and hydrocortisone. Anyone have positive results?

    Hi andrie, I haven't tried hydrocortisone. But I had high night time cortisol as well (but not overall too low cortisol like you). I got recommended Seriphos to lower night time cortisol (and to somewhat shift the cortisol output back to normal rhythm - in theory a least). I haven't tried it at...
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    EUROMENE - New European research network for ME/CFS funded by COST/EU

    Apart from how big this turns out to be (regarding the budget), big thanks to all researchers and organisations involved in this. Great initiative!
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    EUROMENE - New European research network for ME/CFS funded by COST/EU

    Near Neighbour Country: Lebanon, Russian Federation International Partner Country: Canada, New Zealand, South Africa, United States http://www.cost.eu/about_cost/strategy/international_cooperation/ipc I wonder if Francis Collins/NIH knows about this? Probably so?
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    EUROMENE - New European research network for ME/CFS funded by COST/EU

    The sentence about the budget estimate is a little bit twisted (as far as I can judge ;-) ), but I hope the 32 Mio. Euro stand. Would be encouraging. As far as I understand every COST action needs at least five participating countries. So far four have registred (see Factsheet above the MoU)...
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    CellTrend test for ME/CFS (Prof. Dr. Carmen Scheibenbogen, University Hospital Charite Berlin, etc.)

    TiredSam, I have read similar claims from (I guess the same) German charity regarding these tests. I don't think that Prof. Scheibenbogen herself said anything like that though (I didn't come across anything). She doesn't make the impression of a person who makes unreasonable claims, but quite...
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    Ruby Wax does the Chilli ME Challenge!

    Is this her? https://twitter.com/Rubywax
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    New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

    Hi, there hasn't been a pilot study in Germany. There were just a couple of people getting off-label treatment with RTX. So no selection of patients and no study to speak of. It depended if you could find an oncologist and if you were able or willing to pay.
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    Sick but never sick

    I am the same. Never get sick with colds. I had a sudden onset of ME/CFS with something that felt like a constant flu over 4 or 5 months. After this period I have had one or two minor colds in 5 years. I always thought it's weird. My doctor is clueless why that is. I also have Hashimoto's.
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    Effect of Q10 plus NAD on maximum heart rate after exercise testing in CFS

    I got bad insomnia from just small doses of CoQ10 (taken in the morning.)
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    New Fluge & Mella rituximab study: post MEDIA LINKS here

    @deleder2k may I ask if there has been any coverage by Norwegian media yet?
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    New Fluge & Mella rituximab study: post MEDIA LINKS here

    Hi Sasha, if you could give me some time, I will be happy to translate. I am not in the best shape right now, thanks to the 37 degrees today:eek: I will send you a PM when I got something.
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    New Fluge & Mella rituximab study: post MEDIA LINKS here

    Good find, Sasha, thanks!
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    Ivabradine - anyone taking or previously taken it ?

    Hi eafw, I can't tell you much about Ivabradine, I only started it 4 days ago for my POTS. My doc told me to start with 5 mg a day. I decided to start with 2,5 mg instead. It did lower my HR quite a bit. Resting heart rate went down to the low fifties, even under 50 one time and I had a little...
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    Attack on Lipkin/Hornig and Fluge in a medical magazine

    No, there wasn't any study. There were a couple of patients who received RTX as an Off-Label treatment. It's hard to draw any conclusions from that. Only clinical trials will tell.
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    Hornig/Lipkin cytokine study: Foreign language coverage

    A bad one... http://www.aerzteblatt.de/nachricht...udie-findet-fruehe-Immunsignatur#comment22070 It starts o.k. but in the later paragraphs they dismiss the study by quoting Peter White, they refer to XMRV saying that reservation is needed in regard to CFS research and worst that most research...
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    MEAdvocacy.org Update and a Call for Continued Support

    I can only speak for myself: I donated in December expecting nothing good from the IOM and therefore liked the idea of a PR campaign. Clearly to many the IOM report hasn't been bad but quite the opposite. So with this new situation I don't agree with the messages MEadvocacy wants to get out in...
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    Fear of Exercise - actually its rational...er - didnt mean it...

    They continue with their propaganda not only in the UK. There will be a congress of psychosomatic medicine in Germany in late March - with - guess who? - Peter White. Holding a keynote speach about "the treamtent of chronic fatigue syndrome"...
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    All my fault?

    Please don't believe what people like Dan Neuffer are saying - he isn't even a doctor - he is a layperson who seems to have set up a website which perpetuates wrong information about ME/CFS. ME/CFS is a neuro-immunological illness as categorized by the WHO. Don't let people tell you otherwise...
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    Join the National PR Campaign for ME: Power to the Patient (P2tP)

    This is great! A big thank you to all involved. I have thought for a very long time that we need a professional PR Agency and / or Public Affairs agency to go public with our cause. I hope sometimes we will be able to do this in Germany as well. It's hard work to get there - so: Congratulations!
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    Low NK CD57 in the abscence of Lyme

    Hi, my CD57 is very low as well - between 12 and 22.(60 - 360). I am negative for lyme as well but following darkfield microscopy positive for Bartonella and Babesia. (I am very unsure how reliable this darkfield test is, but at least have a positive IgG for Bartonella, so, who knows...) I...
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    Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates

    Nothing to apologize for, Daniel :)
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    Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates

    There were some more donations from Germany for MEandYOU ;-) The Lost Voices Foundation raised more than 5000 Euros http://www.lost-voices-stiftung.org/spenden-helfen/aktionen/crowdfunding-fuer-me-cfs/ and many people were involved promoting the campaign here or at least tried ;-) Of course it...
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    My Rituximab experience with RA and ME

    I am afraid you won't find a doctor in Germany anymore doing off label infusions with Rituximab. There has been media coverage about one patient getting worse after off label RTX and since then I haven't heard of anybody being able to get it here.
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    Reuters: Market failure can be sign of fatigue

    Does someone know why we can't comment? I submitted a comment but it hasn't appeared so far... But maybe we can send tweets instead: https://twitter.com/edwardhadas
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    Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates

    Just donated :-) Thanks to those who organize the crowdfunding campaign!
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    Invest in ME now fundraising for a Rituximab trial!

    Yes, Olaf Bodden reacted badly to Rituxan but we shouldn't forget that many norwegian patients improved substantially with it. This is reason enough in my opinion to do further clinical trials with RTX like the Norwegians or IiME are planning. It's scientific groundwork which is now going to be...
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    Common rarity in 7 out of 7 ME/CFS patients based on 23andMe results

    I am TT!