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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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    Rituximab Phase III - Negative result

    ME Association Statement: Negative phase III clinical trial result from Norway for Rituximab in ME/CFS >> http://www.meassociation.org.uk/2017/11/me-association-statement-negative-phase-iii-clinical-trial-result-from-norway-for-rituximab-in-mecfs-27-november-2017/ Dr Charles Shepherd Hon...
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    ESA: Mistakes in benefits claims could cost up to £500m - BBC News (17/11/2017)

    According to the BBC news item, some people could be awarded up to £7,000 in back payments to compensate for this really quite serious mistake CS
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    ESA: Mistakes in benefits claims could cost up to £500m - BBC News (17/11/2017)

    Mistakes in benefits claims could cost up to £500m - BBC News Just been watching this on the BBC 6pm news: http://www.bbc.co.uk/news/uk-42012116 Looks as though quite a few people with ME/CFS who have been claiming ESA will be getting a small christmas windfall from the DWP… CS
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    The ASA uphold MEA's complaint against the LP again thanks to Dr CS

    From the KK website: I am an advanced practitioner of the Phil Parker Lightning Process® Examiner and Tutor at Phil Parker Training Institute, London. There is an interesting account from someone who had paid for a Lightning Process programme on the MEA Facebook page...
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    Unrest event for medics in Sheffield

    Some members of the Biobank team will also be on the Panel at the LSHTM screening Not sure who, but one or more from - Luis Nacul, Eliana Lacerda, Caroline Kingdon and Jackie Cliff I think we have about 200 people booked in so far - but there may still be a few last minute seats available CS
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    Unrest event for medics in Sheffield

    Thanks to the Sheffield ME group - who are paying for my overnight stay! I think there may still be a few seats left for the screening at London School of Hygiene and Tropical Medicine tomorrow (Thursday 2nd) where Jonathan Edwards and myself will be on the Q and A Panel CS
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    ME on BBC news this morning

    Re time allowed: The two co-presenters were genuinely interested in the film (one had watched the entire film the night before and had been quite moved by the content) and as it was the last item we spoke about it once the credits had rolled. I also accepted a kind invite from Naga to have a...
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    UNREST screening and reception at the Speaker's House, House of Commons

    Did he/she come to the parliamentary screening? CS
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    UNREST screening and reception at the Speaker's House, House of Commons

    Fully agree with you and I did make this very important point as well! CS
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    UNREST screening and reception at the Speaker's House, House of Commons

    In relation to the 3 key actions that need to occur in the UK - These are the key action points from my 10 minute presentation 1 EDUCATION ON ME/CFS FOR ALL HEALTH PROFESSIONALS - AND OTHERS WHO NEED TO KNOW This needs to occur at all levels in the medical hierarchy - undergraduate...
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    UNREST screening and reception at the Speaker's House, House of Commons

    There are other MPs who should be on the list - we will update this in due course Joanna Cherry SNP MP was also there - spotted by one of our members on one of the photos! CS
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    UNREST screening and reception at the Speaker's House, House of Commons

    I have just added this to the MEA Facebook coverage: I also need to thank ME Action Network UK, Sarah & Andy Reed who lobbied MPs, and all the patients who spoke to their representatives. We will add this to the website posting in due course. CS
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    UNREST screening and reception at the Speaker's House, House of Commons

    Mea culpa - you are quite right! So thanks for spotting this important omission I met Sarah at the do and will ask Russ if we can add these names to the 'thank you' list on the MEA website summary CS
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    UNREST screening and reception at the Speaker's House, House of Commons

    It partly depends on how you want to define a Centre of Excellence for ME/CFS I would define it as a hospital or university centre where there are clinicians who are genuinely interested in ME/CFS, and are seeing plenty of patients, combined with links to researchers looking at various aspects...
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    Can anyone recommend a good P.O.T.S. specialist in N West England please? And P.O.T.S./OI experience

    PoTS and ME/CFS: Basic information and links from the MEA: 1 The MEA has a new information leaflet covering all aspects of PoTS in relation to ME/CFS: http://www.meassociation.org.uk/shop/management-leaflets/orthostatic-intolerance/ as well as a leaflet covering the management of...
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    Can anyone recommend a good P.O.T.S. specialist in N West England please? And P.O.T.S./OI experience

    This is the list of PoTS specialists held by the patient support charity PoTS UK: http://www.potsuk.org/doctors Professor Julia Newton in Newcastle is a recognsed expert in this area of medicine - if you can get an appointment Dr Charles Shepherd Hon Medical Adviser, MEA
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    ME is not a functional disorder: MEA petition sent to NICE (Oct 2017)

    ME is not a functional disorder ME Association petition has been sent to Sir Andrew Dillon at NICE: M.E. is not a functional disorder | 23 October 2017 The most recent ME Association petition called on NICE to amend its proposed guideline on suspected neurological conditions, and remove all...
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    UNREST screening and reception at the Speaker's House, House of Commons

    MPs can access the rooms as they have a pass So they can just pop in tomorrow without a formal invite But it would be great to know who they are!
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    UNREST screening and reception at the Speaker's House, House of Commons

    UNREST screening and reception at the Speaker's House, House of Commons The ME Association and Shella Films present: A very special lunchtime reception and exclusive screening of Unrest for MPs and honoured guests | 23 October 2017...
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    Grey and white matter differences in CFS - A voxel-based morphometry study.

    MEA Review: Grey and white matter differences in chronic fatigue syndrome | 19 October 2017 A recent study reported differences in brain structure in people with chronic fatigue syndrome (ME/CFS). This was not the first paper to report such aberrations, but it was the first to reportincreased...
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    Top 50 CFS Blogs And Websites For Patients With ME/CFS

    But good to see two UK sites - ME Association and ME Research UK - occupying third and fourth places! CS
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    Can UK based school legally require me to see their doctor to get extra time on exams?

    I have worked with the OU on disability issues relating to ME/CFS and given a presentation over at Milton Keynes On the whole, the OU takes a very helpful and progressive approach to students with ill health and/or disability - and not just those with ME/CFS CS
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    Can UK based school legally require me to see their doctor to get extra time on exams?

    Hi Brooke Firstly, we have a brand new MEA information leaflet covering most aspects of university life if you have ME/CFS: http://www.meassociation.org.uk/2017/09/new-mea-guide-how-to-manage-at-university-with-m-e-25-september-2017/ Secondly, I have written and signed a 'To Whom It may...
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    Driving with ME/CFS

    Below is a link to an MEA website survey on the subject of car driving and ME/CFS - along with the usual background information Also below is a Q ans A from ME Essential magazine on this subject Dr Charles Shepherd Hon Medical Adviser, MEA A note about this month’s straw poll on car driving...
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    SMILE trial results - MEA critique

    NB: The full review of the SMILE Trial can be downloaded or read online, as a pdf. file version. You may need to download Adobe Acrobat reader if you don’t already have it installed. CS
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    SMILE trial results - MEA critique

    MEA Review: The SMILE trial – a lesson in how not to conduct clinical trials in people with ME/CFS | 12 October 2017 The SMILE trial was an attempt to determine the efficacy of the Lightning Process® when delivered in addition to specialist medical care in the treatment of ME/CFS for children...
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    Did you have a vaccination not long before developing ME/CFS?

    I have a particular interest in the role of hepatitis B vaccine as a triggering factor in the development of ME/CFS As you say, there is a condition called macrophagic myofasciitis, which has very similar clinical features to ME/CFS, and also appears to be linked to hepatitis B vaccine...
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    There is a brief explanation as to why we are helping to fund Dr Keith Geraghty's quite diverse research work at the University of Manchester for the next two years on the MEA website announcement that I provided It sounds as though you are not aware of the numerous papers that he has been...
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    Did you have a vaccination not long before developing ME/CFS?

    We have just updated the MEA flu vaccine leaflet to cover the vaccine that is being used this year This leaflet is currently free to download from the MEA website: http://www.meassociation.org.uk/201...about-the-201718-flu-vaccine-04-october-2017/ Feedback on the use of flu vaccine is welcome...
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    Did you have a vaccination not long before developing ME/CFS?

    General information on vaccines and ME/CFS from The MEA Anecdotal evidence indicates that a number of vaccinations are occasionally capable of either triggering ME/CFS, or causing an exacerbation of pre-existing symptoms The UK Chief Medical Officer's Working Group report acknowledged (in...