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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. C

    Mikes EU Marathons for Invest In ME

    Mike is doing a fantastic job raising money and awareness. If you could even just like his facebook page or share his facebook posts that would be great.
  2. C

    Mikes EU Marathons for Invest In ME

    Good luck for tomorrow Mike. Follow Mike's EU progress here: https://www.facebook.com/mikeseumarathons/
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    MEA hear back from NICE about the identity of ‘topic experts’ | 13 August 2017

    Just an idea, but is it possible to request a FOI on how they came to their decision. They must have made a report on the decision they made?
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    Mikes EU Marathons for Invest In ME

    Would be great if people 'like' his facebook page and invite their friends to 'like' too https://www.facebook.com/mikeseumarathons/
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    #my2016MEawards: Acknowledge people and groups in the ME community you are grateful for

    I'd like to nominate Mike Harley for running 5 marathons this year for Invest in ME. http://www.mikeseumarathons.eu
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    Mikes EU Marathons for Invest In ME

    Brilliant effort again.
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    Mikes EU Marathons for Invest In ME

    Amazing effort. Mike also led a team visiting all 92 football league grounds in 92 hours 18 months ago and raised £4000 for Invest in ME. The amount of time and hard work raising money and awareness has to be commended.
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    Media coverage of Matthees PACE recovery reanalysis: post links here

    Jonathan, it would be great if you could submit a reply for the letters section of The Times regarding this article today. I expect it would get published because it would hold more weight than from a patient.
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    Suzanne o Sullivan on "Sunday with Peston" itv

    This morning on itv, Suzanne o Sullivan was talking to Robert Peston, on his new show at10am. You can probably watch it on catch up Me/CFS was not mentioned. But it does give her air time. Interestingly, Esther McVey the ex Tory minister for Welfare reform who was on there as a commentator...
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    PACE trial: QMUL appeal information re hearing on 20 - 22 April (UK)

    When we know the result?
  11. C

    Information Commissioner's Office orders release of PACE trial data

    Good question. I expect, but don't know, you would be able to if people make representations on the day. Would live to go and hear them. Wonder how many lawyers they will send
  12. C

    Information Commissioner's Office orders release of PACE trial data

    Seems like the date for the hearing is over 3 days! In April. I got this from The information tribunal register EA/2015/0269 Queen Mary University of London 23-Nov-15 FS50565190 Queen Mary University of London Mr Alem Matthees Three Day Hearing 20,21,22/04/ 2016 - Residential Property...
  13. C

    First cold for 10 years! Good news?

    It started with a sore throat 2 days ago and now bunged up nose. No cough though
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    First cold for 10 years! Good news?

    Hi, today, i have a cold for 1st time in 10 years. I know Professor Pinching said that this can be a sign as your immune system maybe getting back to normal. Any experience from people who suddenly have a cold for the 1st time after having ME for a long time? Did you experience a better...
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    UK BBC1 Mon 18 Jan: Panorama - Can You Stop My Multiple Sclerosis? [Crossover cancer treatment]

    I have a feeling they may have re-arranged it to next week. (18/1/15)
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    KCL education module on medically unexplained symptoms

    I find this really worrying. The video i have seen before, I thought they would have archived as they let slip their true beliefs. The bit where Trudie Chalder says "patients think there is something in the cupboard as yet undiscovered, in my mind that is silly". Or something on those lines...
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    Anyone had experience being treated at King's College London?

    Ask her about the rituximab trial. And how that would fit in with the cbt/GET model
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    What a year! Who do you want to thank? The Unofficial 2015 ME/CFS patient awards for...

    A massive thanks to my mate Mike who is raising money & awareness for investinme by running all 28 EU marathons. 4 down and 24 more to go http://www.mikeseumarathons.com Thanks mate
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    Information Commissioner's Office orders release of PACE trial data

    Ive just looked at the information rights register & has just been updated in the last half hour (gets updated every 2 weeks or so) and it looks like no appeal has been made. So times up!!! And its looking good. Im not holding my breath though...
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    Information Commissioner's Office orders release of PACE trial data

    Regarding the placebo effect, if the CBT GET were just placebos, then wouldnt the follow up study mean patients reported health would not have sustained and may have even fallen? Interestingly, if cbt and get were so wonderful, why didnt the patients health improve more at the follow up...
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    Information Commissioner's Office orders release of PACE trial data

    I dont know much about law, but if you look at the 1st tribunal decisions, alot of the appeals are dismissed. http://www.informationtribunal.gov.uk/Public/search.aspx?Page=1 I think bcause the ICO rules in favour of releasing the data, i think they may struggle overturning thedecision. ...
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    Information Commissioner's Office orders release of PACE trial data

    Chances are they will appeal, but do you think their appeal will be successful?? What would be the time scales for this?
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    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    Ive just done a bit of research into Dr Mark Edwards and found that he plays a big part into Functional Neurological Disorder. You may want to follow this link: http://www.fndhope.org/functional-neurological-disorder-2/dr-mark-edwards-responds-to-patient-questions/ Worringly, a section in...
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    New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

    Assuming the rituximab results from norway are positive. My apologises if this has been mentioned before So if you went privately in the uk, Drs maybe willing to prescribe, just with the results from Norway phase 3 trial (assuming they are really positive)? Just seems that the hoops accessing...
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    BACME's new clinical guide to practical management of M.E. for healthcare professionals

    Interestingly, the wikipedia entry "Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells" didn't have a reference. But if you google the phrase it seems to be taken from a book...
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    BACME's new clinical guide to practical management of M.E. for healthcare professionals

    Interesting the sentence in the BACME document: "Rituximab primarily destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells, including auto-immune conditions." This sentence is remarkingly...
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    Plymouth CFS talk on : The development of ‘body reprogramming’:

    Found this on the British Physchological society website, theres a talk in Plymouth and its free on 19/03/2015 - 17:30 - 20:00 Plymouth Hub: The development of ‘body reprogramming’: a theory-based, multi-component educational package for patients with fibromyalgia and ME/CFS - Professor...
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    Hornig/Lipkin cytokine study out now - press release

    What does professor newton mean when she said "repurposing of existing treatments"?
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    Hornig/Lipkin cytokine study out now - press release

    Professor Edwards Regarding these findings, does it assist with the rituximab trial? For example, people who have been ill less than 3 years or more than three years? Or, does it have no assistance to the rituximab trial?
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    Do MEs cause CFS?

    Professor Edwards IN relation to your comment in post 370 above ""This would explain why almost all autoimmune diseases appear in genetically susceptible people at random in time rather than in relation to any environmental stimulus." Myself, like a lot of people say that their ME started...