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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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    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    I was simply following the logic of what other posters presented –‘evil’ wasn’t my choice of word. Isn’t that just an ‘oh poor us’ excuse. Sectarianism amongst patients is obviously a harm to our collective interests, so when organisations take different directions the only thing to do is ‘suck...
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    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    Of course if one has a perspective that groups of UK medical researchers are ‘evil’, and that sustained resistance against that ‘evil’ is philosophically demanded, then isolationism is a logical position. But if the force of that position is dependant upon an absolute solidarity, then it is...
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    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    Yes – the MEA has ‘pledged’ to co-fund the study along with others including the unnamed institution that has pledged £200,000; so to have been accurate I should have written “unless of course they are going to refuse the MEA co-funding the Rituximab study because the MEA is part of the CMRC.”...
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    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    PACE and FINE (only part MRC) were funded under pre 2008 regimes, post the financial crash research money is much tighter and revisiting past injustices with the idea that one can gain some kind of balance in the present is a strategy doomed to fail. GETSET is completed and was funded by NIHR...
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    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    Perhaps instead of ascribing false intention to me (if I’d meant ‘no dissent’ that is what I would have written) you could have acknowledge your claim that Crawley and White had received £millions from the MRC coincident with the existence of the CMRC – was wrong. There is no, and nor could...
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    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    Correct – I meant to convey the sense of which groups were being currently funded, rather than the grant awards themselves being related to the existence of the CMRC. The point being that existence of the CMRC had not been contemporary with awards of £millions to White and Crawley. The £295,826...
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    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    In this case the ‘we’ is very particular, the thread is about UK patient organisations’ involvement with UK researchers based around UK taxpayer funded research. Maybe you have something to show how much better Netherlander patients are organized, how they are in co-operative discussions with...
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    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    Some facts might be helpful - the five MRC grants awarded for ME/CFs research since the CMRC was founded in 2013: http://www.mrc.ac.uk/documents/pdf/cfsme-current-projects/ The PI recipients being: Professor Anne McArdle Professor Julia Newton Dr Wan Ng Professor David Nutt Dr Carmine...
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    Looking for source for Japanese Knotweed

    Fallopia japonica is a harmful introduction and should not be grown outside its native range. In the UK it is covered by legislation https://www.gov.uk/japanese-knotweed-giant-hogweed-and-other-invasive-plants, a number of US states have legislation related Japanese Knotweed as a noxious plant...
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    BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

    The current thread is about a specific NHS service, where, just maybe because of the current attention on that service there's a possibility of redirecting in a small way, how that service is delivered, to the benefit of ME/CFS patients. Shifting from a cure focus to a management focus with...
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    BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

    What does any of that have to do with the specifics of the Southend Hospital service ? A generalised accusation against anyone who might at some point have agreed with a BPS approach to ME/CFS isn't in any way equivalent to a statement that a given health care professional has been negligent. We...
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    Huff. Post: How Walking - and Laurie Lee - Got Me Back on My Feet From Illness

    My reading impairments are much more variable, from 100% word blindness to maybe managing a magazine article of realtively difficult text of up to a couple thousand words at a sitting. I haven't read a whole book though in maybe twenty years but that's perhaps more about tracking memory rather...
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    BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

    An accusation of medical negligence needs to be backed up with evidence - no one has offered evidence that meets the usual tests of negligence, and in the absence of evidence the accusation of negligence. It is certainly not a basis for a broad criticsm of UK Physiotherapists, nor for an attack...
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    Huff. Post: How Walking - and Laurie Lee - Got Me Back on My Feet From Illness

    It's a hymn to Laurie Lee, the British Countryside and walking, as much as it is about illness - 'flowery' hits all the literary references, I guess that could be a bit opaque to a non Brit audience. For more on Laurie Lee: http://www.bbc.co.uk/news/uk-england-28015290
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    Huff. Post: How Walking - and Laurie Lee - Got Me Back on My Feet From Illness

    Seems like you need to be signed into Facebook for the link to work. Work around - copy and paste this http://www.facebook.com/pages/ME-Association/171411469583186 into your browser's address bar then login to FB and you should arrive at the ME page - article is now some way down.
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    BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

    Green is now in private practice: http://uk.linkedin.com/pub/dr-alice-green/1b/b7b/814 where the date given for her Essex Centre employment is 2005 -2007 but note this was not the Southend based service but part of the Barking, Havering & Redbridge NHS Hospitals Trust, the current CFS service...
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    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    I don't think the authors are claiming to have found new lymphocytes so the reference is as this table: Typical recognition markers for lymphocytes The authors therefore are likely talking about NK cells - phenotypes CD16 and CD56 and Gamma delta T cells - TCR and CD 3 phenotypes. This is...
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    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    A confusing terminology - it's not 'hybrid cells' which is a recognised term, but "hybrid populations", by which the authors seem to imply that there may be some definable patterns to the relative percentages of T and NK cells in (some ?) ME/CFS patients. Needs independant replication to show...
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    UK: Department Work & Pensions Assessors Training Guide to ME/CFS Published - 28 May 2014

    Even if BPS theories and misrepresentations are in the core of the structure of ESA and PIP (I'd like to see some evidence that this is uniquely so) they are there because they serve a political pupose, not because politicians were fooled into acceptance or blind to the implications. Again I'd...
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    UK: Department Work & Pensions Assessors Training Guide to ME/CFS Published - 28 May 2014

    Cheap or economical ? Taking a whole set of different elements, separated by time and context but which have a sort of connecting ‘meme’ and making that into a consistent story is quintessential conspiricism. Few posters here accept that kind of thinking when it comes to justifying the BPS, so...
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    BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

    The MEA lists several groups: http://www.meassociation.org.uk/2009/09/essex/ though of course their members and supporters may be heavily overburdened already. I'm not sure what the right way to alert those groups, if they are not already aware, of the existience of this discussion. Perhaps an...
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    BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

    There certainly is a free speech issue in the context of the NHS. It's a straw man argument to use terms such as 'whining fakers', because no matter how inept they may have been Collings and Newton did not use insults - and their likely argument is that they were advancing a reasoned academic...
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    UK: Department Work & Pensions Assessors Training Guide to ME/CFS Published - 28 May 2014

    Having lived through the impacts of 30 years of welfare changes, from having a young family to approaching the propospects older age benefits, I think I have a small degre of understanding of what happened in the past and what is happening now. Advice given to a UK Government Department under a...
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    UK: Department Work & Pensions Assessors Training Guide to ME/CFS Published - 28 May 2014

    Agreed - UNUM has a contract with Works and Pensions to "limit disability awards." just doesn't make sense. It could be that UNUM or a subsidiary is involved in training DWP 'decision makers' but the idea that somehow UNUM is covertly processing ESA and PIP claims alongside the DWP staff seems...
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    UK: Department Work & Pensions Assessors Training Guide to ME/CFS Published - 28 May 2014

    There was a financial deal with a member of the UNUM board back in 1994, and the restructuring of disability benefits by the then Tory Government was undoubtedly influenced by the Insurance Industry. It's likely that UNUM or other comparable businesses have provided technical services to the DWP...
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    BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

    That's certainly an accurate summary of the broad position in the private sector. Something rather different might be in play were the organisation concerned an academic body where the issues of academic freedom need to be supported, and from a different perspective, across all parts of society...
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    BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

    (1) I don't think the disease in question would have any impact on the way an NHS Trust would deal with this sort of problem. If there was a publicly perceived vulnerable patient group, say children or frail elderly, that was particularly affected, that would certainly change the focus, and of...
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    BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

    Few people would disagree with the principle but there's no point in having unreasonable expectations where wrongful dismissal claims could cost the NHS £100ks, and where staff would resist change where a witch hunt was perceived. There is also an issue of consultant level recruitment which...
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    BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

    I think that underestimates the bureaucratic force within the NHS - it has 60 years of HR practice that supports staffing relations in the biggest employer in Western Europe, once a process has started it doesn't easily stop. It's not clear from Noreen Buckley's letter whether 'full internal...
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    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    There are very substantial differences between peak and max VO2 and to quote from this useful overview: http://www.cpxinternational.com/attachments/028_BJW%20-%20Vo2%20Peak%20vs%20Max%20final%202.pdf In an effort to circumvent the problem of whether the subject gave a "sufficiently-good"...