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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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    CFS Patients War Against Controversial U.S. Health Research Plan

    Firstly - echo praise for Susie Chapman whose work on maintaining a watching brief on the ICD and DSM processes has been immensely valuable and her decision (which no one could begrudge her) to withdraw from activism in that area, is undoubtedly a loss. Secondly - ICD is: a CLASSIFICATION...
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    WPI wants our blood for a study

    Company details are here, though some links may not work: http://cfsmirror.blogspot.co.uk/2012/05/profit-and-loss.html There's little definitive evidence of H.Whittemore's sole ownership - he is named on Nevada SoS documentation, but that may indicate no more than a management position, rather...
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    Occupy CFS: Jennie Spotila - At the Microphone - public meeting 27 January

    Nicely partial treament there but - hogwash. Advocate first appears in English as a term for a representing lawyer http://www.etymonline.com/index.php?term=advocate you'll see that the intercessionary role is key, it implies that the advocate has a contractual relationship with the party...
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    What Should Phoenix Rising Tell the IOM Committee?

    I think that is wrong. Even at the level of saying 'we all want a cure', I doubt that there is an absolute unity given that there will be huge variation in cultral conception of how such a 'cure' would be delivered across a diverse patient group. For some it will be enough that a cure would be...
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    What Should Phoenix Rising Tell the IOM Committee?

    We can argue forever and about who is 'right' and who is 'wrong' - the point of my post however was not an assertion of correctness but to underline that there is no single patient perspective, and that PR can not and should not claim to 'speak' for all, other than to specifically recognise that...
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    What Should Phoenix Rising Tell the IOM Committee?

    As far as I can tell PR is the only patient org with a legitimate claim to have an International member/contributor base, that has been invited to address the meeting on the 27th. It’s only on that basis that I’ve stepped back in here. Personally I’d like PR to give an honest account of the...
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    House of Lords debates the PACE Trial | verbatim report and YouTube

    Parliament is rarely about the the application of intellect, primarily it is about 'stating positions' .To be effective the players are limited to a process that: a) seeks to deny room for the opposing side (whoever that is) to state their position (whatever that may be) and b) appropriate room...
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    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    A wikipedia article with just a single reference ! And no reference at all for CFS !!! Here's a definiton of EI that clearly removes it from any link with PEM as it demands contemporary linkage: Exercise intolerance results when a subject is unable to sustain a required work rate sufficiently...
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    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    Why would EI include PEM ? To even argue for an equivalence/relationship to me seems perverse. Exercise Intolerance is a well established phenomena in heart disease, COPD and some Cancers - one of the most prominently recommended treatments for 'exercise intolerance' is 'exercise therapy' (you...
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    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    The point is not whether 'I know' them - the point is whether they mean anything. The 25% Group isn't a source of research or stringent analysis and frankly in the light of this http://www.edmesh.org.uk/2013/02/fall-of-the-cross-party-group-on-me/ I can only see the 25% Group as pursuing a...
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    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    Patients are not going to be driving the service acquisition process. From the patient's perspective little will change - GPs will be the first contact and referal will be to the appropriate available specialist service if that is required. GPs will have a more pivotal role in commissioning of...
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    Another UK ME doctor up before the GMC

    Prevention, health education and public health interventions all contribute to a nation's health outcomes, just as much as the delivery of treatments. The reality is that the UK has for over 50 years consistently delivered better health outcomes than those of the US, and achieved that for a far...
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    Another UK ME doctor up before the GMC

    Per capita health spending (2010) US - $8,362 widely recognised as 'unsustainable' - UK - $3503 - current budget requiring 'efficiency' savings of £20 billion 2011 -2014. Despite having a per capita health spend more than double that of the UK, the US actually has poorer health outcomes...
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    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    I would think the fact that 'the most severely affected' of many diseases end up dying would be pretty clear evidence that all 'treatment' has limits. There is no 'Wessely school of psychiatry' - in the context of PACE your appeal to ad hominem blanket approprobation really only works as 'White...
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    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    Where is there any explication of an equivalence between there term 'exercise intollerance' - and Post Exertional Malaise ? "Exercise Intollerance" suggests that any negative effect must be directly consequential on 'exercise' (definition of 'exercise required) and which is impacting to a degree...
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    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    Define 'harm' ! Many interventions involve negative effects, if a certain number of people are helped, then health service providers are going to be attracted to that intervention. A 'they shall not pass' approach is unlikely to be persuassive, and something rather more tactical is needed if...
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    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    Is exercise intolerance is a diagnostic symptom ? What does 'exercise intollerance' mean ? Is M.E/CFS a neurological illness ? Is there just one single aetiology in play ? Is everyone with M.E/CFS fixed at a single level of capacity ? I didn't write 'rehabilitate' - the term I used was...
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    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    I'm only guessing - but the design and active delivery was done by three workers - a psychologist, an occupational therapist and a physiotherapist, it seems to have been a team approach set within a construct of 'pain management' style delivery. I therefore think it is possible that the research...
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    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    There are pre PACE sensibilities still in place with some therapy services, which I suspect originate with this study http://www.hta.ac.uk/fullmono/mon1037.pdf see sections on Background on the use of exercise and Use of Structured Exercise - pages 5 and 6. which seem to set exercise into a...
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    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    But that has always been the case, although obviously the increase in sanction scope makes the problem more acute. There's been ample evidence of sanctions being applied to people with mental illhealth and learning difficulties, and there have been some moves to addess this: see Items 81 to 96 -...
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    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    This was something initiated back in the Blair years. I didn't follow the process in detail but the Welfare Reform Act 2012 http://www.legislation.gov.uk/ukpga/2012/5/contents actually repealed all specific reference on the face of the Act. However, somewher in the provision for 'Regulations'...
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    Paper by white reviewed by wessely

    In a sense yes Cornwall is unique in that it has a very particular demographic and health profile - http://www.apho.org.uk/default.aspx?RID=49802 The local area profile will have a huge effect on the character of health service demand, it's easy to over simplify this into inner city versus...
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    Paper by white reviewed by wessely

    Here's the money shot: http://shortreports.rsmjournals.com/content/4/1/4.full?maxtoshow=&HITS=10&hits=2&RESULTFORMAT=&andorexacttitle=and&andorexacttitleabs=and&fulltext=xmrv&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&fdate=//&resourcetype=HWCIT Trying to categorize illnesses into either...
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    Comment by 'In Vitro Infidelium' in 'Psychiatric Peregrinations'

    @MeSci. cont. Antivax: refers to a particular activist position, I certainly wouldn’t characterise individual choice in adult vaccine avoidance as inherently ‘antivax’ – although failure to recognise social obligations in not protecting oneself might bespeak the arrogance of an antivax...
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    Comment by 'In Vitro Infidelium' in 'Psychiatric Peregrinations'

    @MeSci. cont. Auto-immune: I have not written anything about auto-immune disease on the CFSM blog. Perhaps you mean the references I made to ‘neuro-immune’. Certainly I consider the use of that term as it was applied in relation to the WPI and XMRV, to be wholly specious. As far as the term...
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    Comment by 'In Vitro Infidelium' in 'Psychiatric Peregrinations'

    @MeSci. I’m not sure that discussing a Blog from outside the PR parameters, on PR makes much sense particularly given that some of the posts are two years old and the most recent is from May 2012. Below are some briefish responses, but apart from some the organisational and historic stuff on...
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    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    My guess is that PACE - and all that has flowed from it, has been structured/restructured to have 'confluence' with these: http://www.iapt.nhs.uk/silo/files/iapt-data-handbook-v2.pdf and http://www.iapt.nhs.uk/silo/files/iapt-data-handbook-appendicies-v2.pdf - main page: Measuring Patient...
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    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    IMO the same type of statistical justification as used to advance the PACE agenda is very likely to find its way into all parts of NHS delivery, unless energetically resisted. As far as patient demand is concerned, I have no optimism that it will have anything more than a very limited effect...
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    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    I agree entirely, while I remain doubtful about CBT/GET being a source of significant harm, and there is some likely benefit to some M.E/CFS patients in some circumstances, the way that the PACE, FINE etc monolith is progressing is IMO profoundly harmful to a science referenced NHS. Just so...
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    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    But is it not the point that Firestorm makes in quoting the BS thread, that otherwise sceptically inclined people are not willing to take the charge of 'spin and hype' at face value. I accept that is massively frustrating, but 'should' rarely informs what people actually do. My own sense about...