1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

Review: Unity of opposites? CFS and the challenge of divergent perspectives in guideline development

Discussion in 'Latest ME/CFS Research' started by Firestormm, Nov 18, 2012.

  1. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    I first attached this to the CPG Scotland thread: http://forums.phoenixrising.me/index.php?threads/cross-party-group-on-me.19788/page-17#post-308488 as it features the Scottish Health Care Needs Assessment.

    However, having skimmed the text, it appears worth discussion on it's own thread as the thinking behind the review (ha ha) could and has been applied to other Guidelines e.g. CCC.

    Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development

    http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.abstract

    Charlotte Smith, Simon Wessely

    Abstract

    Guideline development by its nature is a process and method of integration and synthesis of information, be it originating from research, evidence-based medicine, clinical findings, patient experience and/or individual narratives of an illness or disease.

    In the majority of cases, it can be assumed that this information and these ideas are travelling in the same direction; however, it is possible that the objective and subjective cannot be synthesised, and appear mutually contradictory.

    In this commentary, an example of where this might be the case has been analysed: a report published by the Scottish Public Health Network, a Health Care Needs Assessment of Services for people living with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).

    It appears from reflection and analysis of this document that this process may indeed have gone awry. We propose that, if followed, this document would lead to the adoption of dangerous diagnostic criteria for ME/CFS, as well as preventing patients from making informed decisions about treatment options, and discouraging clinicians from following evidence-based medicine and recommending proven treatments for ME/CFS, because of potential implications for future commissioning.

    This commentary seeks to highlight some of the problems, contradictions and unintended consequences of a divergence between patient perspectives and evidence-based medicine despite probably sharing the same aim, that of improving patient care and striving for better understanding and better treatments for disease.

    Full Review: http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.full.pdf html available free for download, view on line - just register.

    The following are those considered in the review::

    Mackie P, Dougall R, Conacher A. Health Care Needs Assessment of Services for
    people living with ME-CFS, Scottish Public Health Network. 2010. http://www.
    scotphn.net/pdf/Final_report_web_version_271110.pdf (accessed 11 Mar 2012).

    Mackie P, Dougall R, Conacher A. Health care needs assessment of services for
    people living with ME-CFS- short version for patients, Scottish Public Health
    Network. 2011. http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_
    09_Final.pdf (accessed 11 Mar 2012).

    Carruthers BM, Jain AK, Meirleir KL, et al. Myalgic encephalomyelitis/Chronic
    Fatigue Syndrome; Clinical Working Case definition, Diagnostic and Treatment
    Protocols. J Chron Fatigue Syndr 2003;11:1–115.
     
  2. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
     
  3. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
     
  4. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
     
  5. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
     
  6. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Apologies for quoting so much from this Review, but I do feel it is raising many issues that perhaps need addressing, considering, reflecting upon, by those within the 'community'.

    It certainly appears to be hitting the mark in relation to many of our recent discussions on the forum - even perhaps those in the distant past.

    The crux of the matter? :sleep:

     
  7. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Done. Sorry Kina if it's too much. All very relevant but looking at it I probably got carried away somewhat :)
     
  8. Bob

    Bob

    Messages:
    8,840
    Likes:
    12,362
    South of England
    I wonder why he forgot to mention the response rates in the PACE Trial (11% to 15%), and the, as yet, unpublished deterioration rates. And the fact the CBT failed to demonstrate clinical usefulness, in terms of improving physical disability. Oh, and the objective measures, in which both CBT failed completely, and GET failed to make a meaningful difference.
     
  9. user9876

    user9876 Senior Member

    Messages:
    793
    Likes:
    1,943
    If we were to believe the results of the PACE trial the correct statement would be that it shows that there exists a safe way of delivering GET. Smith and Wessely then makes a big jump and assumption to say that the issue of GET is resolved beyond all reasonable doubt. That generalisation suggests they are claiming that all implementations of GET are safe.

    Firstly the saftey of GET was not tested what was tested was the safely of a combination of (non)standard medical care and GET. To make this generalisation you need to be able to argue that there were not elements that combined to maintain safety.

    Secondly a particular protocol for GET was tested where there was considerable monitoring of the delivery channel. There is a big question over the validity of this generalisation. Patient surveys demonstrate that there exists ways of delivering GET that do harm - a counter example to their argument. They or the PACE trial offer no discussion of the GET protocol and how to ensure quality assurance in its delivery. There statement becomes somewhat absurd a bit like saying paracetamol is safe when it is only safe within certain dosage guidelines and when manufactured to a certian standard with an appropriate amound of quality control.

    There is also the question of what they mean by safe since the PACE definition changed from the published protocol to the published result. This change cast doubt on the trust worthyness of the statement that the PACE trial demonstrated the safety of any technique.

    It seems to me that such jumps and generalisations can be made without note since Smith and Wessely, along with many others talking of evidence based medicine, do not have a formal framework for reasoning about evidence.
     
    Valentijn likes this.
  10. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    44
    Santa Rosa, CA
    http://www.meactionuk.org.uk/Ruffled-feathers.htm?forumid=331851

     
    Merry, ukxmrv and Enid like this.
  11. Marco

    Marco Old blackguard

    Messages:
    1,383
    Likes:
    1,060
    Near Cognac, France
    Why post this under research?

    Its clearly a (rather whiny) opinion piece.
     
    Merry and Enid like this.
  12. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    In the absence of a 'whiny opinion' section, I felt it was in the correct place, Marco :)
     
    Holmsey and ukxmrv like this.
  13. taniaaust1

    taniaaust1

    Messages:
    8,232
    Likes:
    5,199
    Sth Australia
    I bet Simon Wessely would of been very peeved off to not get a say in all that!

    If these signs are never seen in ME.. why do people like me get them if in a very crashed ME statte? ataxia, rhythmatic myoclonus, fasciculations.. comments like these just show that the ones making the comments have never seen a severe ME case. It shows a complete lack of knowlege of ME.. and if they stopped confusing CFS and ME together, they just wouldnt be having this confusion.

    Some severe ME cases in England go completely undiagnosed and are hence told they have an unknown neurological illness (I knew someone in that situation) cause many over there are unwiling to diagnose ME in those who do have severe ME and hence many symptoms which show.

    Maybe that is true that the canadian guidelines arent raised by patients to their NHS clinicians.. the likely case is cause many who do have canadian defined ME/CFS are avoiding the NHS clinicians as they know they will just be told to do GET and CBT and they are well aware these dont do much for those who have a neurolgical illness or carry the possibility of doing harm to them.

    (cant read it and comment too any further.. too much for my brain)
     
    Firestormm likes this.
  14. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    I think we've discussed recently how reported (and observed) neurological 'signs' can often lead to a diagnosis of a co-morbidity e.g. epilepsy or even perhaps something like POTS.

    Point I am trying to make here (and not very well) is that anything that is observed in one person with a diagnosis of ME is often not seen as being a part of ME.

    These things that are reported, by me, by others, are seen as being quite often unique to me, to you, or to a small group - but not generally something that is observed in all people with this diagnosis.

    Until such time as a better definition of ME is afforded based on science, and not solely on symptomology that is generally seen/experienced by the whole of those with this diagnosis - we ain't gonna get these e.g. neurological 'signs' recognised as being part of 'ME' and experienced by all.

    There are of course quite a few things reported by people on forums and the like, even listed as associated in the various criteria - but more often than not these are listed as 'optional' e.g. if you don't experience them you can still experience other things that validate your inclusion.

    If someone experiences POTS for example, and is tested for it, and it is diagnosed, then, like epilepsy, or anything else, it will be taken as a co-morbidity.

    We've spoken often of neurological signs and symptoms but, again, until and unless something specific is associated with ME that is unique (I would argue) and can be applied to the majority - indeed something that would serve to define the condition - we cannot really argue against observations such as the one you refer to above.

    This is why I think, certain studies were able to exclude all those with a 'neurological disease' or 'organic neurological disorder' (I forget the terminology used).

    Not at my best today. Lovely walk on the beach yesterday though. But am feeling it now. Still I think the above makes sense of what I mean to say :)
     
  15. Marco

    Marco Old blackguard

    Messages:
    1,383
    Likes:
    1,060
    Near Cognac, France
    No but there is the community lounge which might be more appropriate for discussing opinions/philosophies.

    Re the content (sic) it presents a spurious argument that the CCC and the Scottish Public Health Network are effectively 'splitting the difference' between subjective beliefs ( representative of a certain vocal section of the patient body) and an objective body of science (represented by the usual suspects).

    In reality, after many decades of effort the BPS movement have produced no objective evidence in support of their illness 'model' or that demonstrates effectiveness for the treatments based on this model.

    Rather than these documents representing a 'unity of opposites' the patient and 'establishment' perspectives would be better characterised as two competing philosophies both of which lack evidence.

    That said, back in the day I used to believe that results were what counted and not mere effort or activity. Given the lack of results from the BPS school despite the funding, reams of publications, 'gold standard' RCTs yadda yadda its clearly time to look elsewhere.

    Consequently I find the BPS school's input to ME/CFS irrelevant but each to their own and all that.
     
  16. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    Big effort thanks Firestormm - the obvious question is what is SW doing in the ME field now (having declared no interest some time ago). Also see the absence of ME in the TITLE- is this just a convenient way to sweep all things fatigue into his considered CFS basket still ?
     
  17. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    I think both might be accused of bias. A failure to acknowledge or even review the opinions and/or evidence advanced by the other in a satisfactory manner.

    Of course the 'BPS-lobby' (I need a term, but don't like this one really, just can't come up with one for 'either' 'side'); can now revert to the NICE Guideline.

    The 'opposition' need to do better but I suspect that to mount a satisfactory defence advancing a more 'biomedical' view is beyond those behind the Scottish effort.

    After all 'we' are patients. Sure we have our charity stalwarts but even they are (in some respects) advancing views that the others don't agree with - or rather don't agree with the methods employed I suppose.

    There is no central argument, no central alternative, explanation that is evidence-based to 'counter' the current 'status-quo'. All 'we' have are tentative 'interesting' science developments.

    Advancing the view that (the last time I heard it) 'over 4,000 science paper have been published' is rather lame I am afraid. Indeed advancing anyone persons or group of people's hypothesise is lame too.

    The various attempts at refined criteria are doing very little to validate the bio-medical view. My previous comment that if anyone is to blame, then I blame the bio-medical-lot - is because their collective arguments have never been strong enough - even if they have achieved some unity - which often they don't.

    When NICE is reviewed next year, I doubt very much if anything will change that is approved of by 'activists' (yeah I know but again I can't come up with a collective term - those who are able to protest - are able to follow developments?).

    The so-called 'advances' seen in the publication of e.g. Rituximab might get an appraisal. They won't though appear anywhere in the Guideline.

    Personally, I agree. At a personal level I don't regard the BPS school as relevant particularly to me. BUT they are very relevant to the world in which we live.

    In relation to the above Review from Charlotte Smith, there were some things that might be learned from. I need to read through it all again, later perhaps, but one thing I recall now:

    Patient surveys about GET and CBT. It is quite true to say that in general these do not ask the question: have you ever tried CBT and/or GET under the care of a specialist?

    At least I think that's what she was driving at. Quite often these surveys do not attempt to quantify experiences. They merely ask for one's feelings about the therapies.

    I think the last major survey from the MEA - the results of which are being compiled as we speak - did try and do this. So perhaps we might be able to see in what way these therapies are deemed by patients to have helped (or not).

    This kind of data - although limiting - is what I personally would like to see collected by every specialist centre in the country. This local processing of research is the only way that I can see whereby such practices can be challenged, and/or changed and improved or removed.

    Trouble is (or one of them) it remains a subjective experience. And a 'bad' experience could be down to the practitioner (or at least this could be one argument used to counter any claim).

    Need a rest. Be back later dude :)
     
  18. biophile

    biophile Places I'd rather be.

    Messages:
    1,403
    Likes:
    4,877
    What is said about the Canadian definition:
    As a comparison to the Oxford definition http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107 :
     
    Bob, Merry, Enid and 1 other person like this.
  19. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Hi Enid,

    Afore I retire. My thoughts would be: he didn't write this review Charlotte did. He was a 'mere' consultant/whatever providing background.

    Also, I wonder if his previous 'on the record' comments relate to him no longer seeing patients - rather than not being consulted on 'CFS matters'?
     
  20. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Very interesting Biophile. I doubt Charlotte was aware but I don't see what relevance it has to her Review. Of course she did reveal the finance behind the PACE trial but didn't explain why and (as has been commented upon above I think) she didn't point out the 'failings' of the Trial.

    Any challenge to PACE - incidentally - has to include the simple 'fact' that if 30-40% of patients did indeed improve (yeah I know) then that still left up to 70% who didn't.

    Also it didn't include severe patients - up to 25% of the population (though this has never been challenged just assumed to be a rough estimate).

    But the main factor is that the intense 'treatment' applied during PACE is not ANYWHERE applied in practice. No specialist centre or doctor's surgery or PCT or GP commissioner can AFFORD to apply sufficient resources in this manner.

    And even if they did - to get 40% of people feeling a bit better but not to return to work or come off of benefits - is a ruddy financial disaster.

    Of course no 'activist' is going to suggest that PACE put their money where their mouths are - are they? Well except for AFME according to the above and look where that stance gets them among the 'activists'!

    That's all folks :)
     

See more popular forum discussions.

Share This Page