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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. S

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    OMG: to all those shouting about how great the Collaborative is - Crawley is being funded to the tune of possibly more than £2.5 million pounds to carry out dubious research on children with ME/CFS that will not alter the course of this illness at all. This may not include funding she attracts...
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    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    Holgate appears to be a 'company man' to me - put in there by his chums at the MRC to be the face of new UK-MECFS research. He probably was asked at a private club in London's west end, meeting with the Chair of the MRC, "Steven old boy, we are getting a lot of grief from ME charities about...
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    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    to treat an illness one must first have an idea what you are treating, ie what is the illness and what causes the illness, treating an illness were you have no clue whats causing it, no clue what its doing, an no clue how treatments help or hinder - this is what we have had for 30 years. Stupid...
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    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    excellent point - above - a club where the psycho lobby run the board and decide who is a member or not - there is no watershed moment in the UK for ME patients - perhaps all we are witnessing is the latest more sophisticated embodiment of the psycho lobby, not a Kings College Group, but a UK...
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    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    thats were I was being slightly ironic - it wants to appear to be independent but its an MRC cooked up creation to appease disgruntled patient groups who were critical of the MRC - its also a tactic to deflect attention, eg dont criticise the MRC, its the UK/ME Research Collaborative that is an...
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    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    It as clear as day to me - and should be to anyone else - that the most likely reason for the Collaborative is the MRC responding to criticism from ME/CFS patients about funding going to the psych lobby. In response Holgate is given the role of setting up a so called 'independent' research group...
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    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    the only contribution Bob seems to make is criticising others commentary - calling my views tittle-tattle - yet making no reference to any of the emails that helped start this process off. Bob wants all the emails, all the evidence, perhaps Bob you should read the parts of the emails from the...
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    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    Bob - you seem to want to decide whats relevant or not, but even after I showed you how points 1-3 were indeed relevant to the Collaborative you then change tact and claim its not substantiated - even bordering on being aggressive, if thats how you need to make your point fair enough, but you...
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    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    you are either naieve or blind to the facts before you - when you say they , who are they? do you think psyhciatrists who earn hundreds of thousands of pounds in salaries and have essentially concerned the market on ME/CFS research in the UK, do you really think they are putting their shoulder...
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    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    May I reply to the above: First - two researchers that I have knowledge of tried to join the collaborative - Dr. Keith Geraghty and Dr. Stoyan Kurtev - both as far as I know were refused full membership on the grounds that they hadnt published about ME/CFS prior (this is a requirement of full...
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    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    Dear Forum Members I must bring to your attention an additional bit of information. I am aware of a researcher at Manchester University Dr Keith Geraghty, who attempted to join the ME/CFS Collaborative and he was refused full membership on the grounds he had not published a paper on ME/CFS in...
  12. S

    Peter Denton White/Queen Mary, University of London again refuse to release data from £5m PACE Trial

    where is the original reference to Peter White's comments that the request was 'vexatious'?
  13. S

    Peter Denton White/Queen Mary, University of London again refuse to release data from £5m PACE Trial

    They claim a request for the 6-minute walking test results for the (so-called) recovered group is "vexatious." where does this bit come from - I understand the PACE Trial - just not the complaint, who its against and who said what, when, where and to whom?
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    Peter Denton White/Queen Mary, University of London again refuse to release data from £5m PACE Trial

    sorry Im lost - could you fill in the background to this please?
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    (Ongoing UK study) "Investigating the epidemiology of CFS/ME in children using the ALSPAC cohort"

    This study is a waste of money - spending scare resources on a psychiatric study of prevalence and risk factors whereby the study will be biased by the bias of the investigators who will use an out-dated Oxford Criteria , risk factors will be drawn from biased previous studies done by...
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    UK ME/CFS Research Collaborative September

    there is no reason at all why proceedings should not be made public - I salute your efforts and wish you success
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    Treatment outcome in adults with CFS: a prospectiv​e study in England based on the CFS/ME NOD

    We did not find that depression, anxiety or duration of illness at assessment predicted outcome. Clinicians providing assessments should not assume that co-morbid mood disorders or length of illness are predictors of outcome. White puts his name to this paper - no doubt just to get his name on...
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    The Optimum Health Clinic and its Treatment and Research

    Just a few points: Alex Howard says he had ME and recovered. If you look at this own videos it started when he was 16 (possibly glandular fever I'd guess) - he then went to University 18-19 and started to feel well at the end of Year 1 (rememeber one has to attend classes to be at University...
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    House of Lords debates the PACE Trial | verbatim report and YouTube

    The number (%) of patients achieving a clinically significant reduction in fatigue in each group was: APT 96 (64.0), CBT 113 (76.4), GET 123 (79.9), and SMC 98 (64.9). So CBT compared with APT had only a 12% reduction in fatigue (and this may be due to perception bias or therapist infuence) &...
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    House of Lords debates the PACE Trial | verbatim report and YouTube

    Get your facts first, then you can distort them as you please. Mark Twain It is better to remain silent and be thought a fool than to open one's mouth and remove all doubt. Mark Twain
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    FINE Trial: Pragmatic Rehabilitation Presentation (initial presentation to patients)

    To use s phrase from Dr Crawely when she talked about the WPI clinic -- "whats it all about....its all about money" who gets the Money, the FINE Trial Group, Liverpool, Manchester and so on, who gets promoted, Chew-Graham, Peters, Salmon. Who gets the money, the schools they work for. Who...
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    (FINE) Factors influencing engagement of patients in a novel intervention for CFS/ME (Chew-Graham)

    This qualitative study aimed to establish the factors which are important for patients to engage in this novel intervention for CFS/ME within a trial.... the findings to make recommendations for the referral process to such a service, were it to be commissioned. my word, PACE and CBT get...
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    A preliminary prospective study of nutritional, psychological and combined therapies for me/cfs

    in the Review of this Article - Dr Price Oxford Psychiatrist even states he is 'prejudiced towards studies on this kind' but even he questioned some of the results, but didnt dismiss the very poor quality of this article - like Does anyone in the study actually have ME/CFS would have been the...
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    A preliminary prospective study of nutritional, psychological and combined therapies for me/cfs

    Something I find really doggy about Alex Howard is his used of Ex patients. I believe his website was set up by an ex patient, recently a doctor who claims to have had ME/CFS is not a medial Director, his Psychology Director also may have been an ex patient, and the list just keeps going on an...
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    A preliminary prospective study of nutritional, psychological and combined therapies for me/cfs

    I found flaws in the stats too - but I decided it wasnt worth my attention showing that up as the study is flawed from the get go - Dr Arroll wasnt even at the clinic when collected was first collected, study only lasts 3 months, paid for by Alex Howard, who charges patients for treatments -...
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    A preliminary prospective study of nutritional, psychological and combined therapies for me/cfs

    This paper explored treatment of his patients at his private clinic - 138 people and the results are shocking. The study claims to show that ME/CFS can be treated after just 90 days of therapy and nutritional advice. I have written to the BMJ Open to Express my concerns. Looking at the study...
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    A preliminary prospective study of nutritional, psychological and combined therapies for me/cfs

    I was very annoyed by this paper - there was no screening to see if the people they were treating actually had ME/CFS - yet this paper promotes the idea thats its treating ME/CFS - the reviewers didnt pick up on this, not surprising given it was Dr. Crawley of Bristol and Dr. Price and...
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    The Optimum Health Clinic and its Treatment and Research

    Hi All I've been doing some digging around on the Optimum Health Clinic in London run by Alex Howard. Many of you may know him from his book "Why ME". He was a psychology student at Swansea University, he got sick with a viral illness around the age 17 and it was gone by age 23. During this...
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    New CFS and inflammation paper

    Folks, Ive just read through this paper. Its probably one of the best overview papers Ive read in the last 3-4 years and as an ME/CFS sufferer, who has spent the last few years reading and reading and formulating ideas in my mind (with my main idea being that an intra-cellular pathogen tiggers...
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    Natural killer cells, perforin, and glutathione depletion

    Hi, from my readings for the majority of ME/CFS patients C-reactive protein levels are within normal ranges - if you have raised C-reactive protein you should contact your physician because it is a sign of inflammation, it should really be actue, however there are some chronic conditions that...