Discussion in 'General ME/CFS News' started by Countrygirl, Dec 29, 2012.
Yep. It's all in public domain if one takes the time to look.
My money is on combination/s of factors (in most cases), see this for illustration
All that the ICD is, is a means of of ensuring consistency in the classification of disease across National boundaries - it has no diagnostic power and absolutely no impact upon research selection criteria. To the extent that the UK is signed up to the ICD process, all that is required of UK Gov. is that public health statistics fit with the ICD coding. That's it. Nothing to do with health service delivery (other than recording procedures), nothing to do with clinical judgements, nothing to do with research (other than recording procedures). The ICD isn't some totem that can be used to bring everyone into line - it's just a clissification system.
use the full quote, please and I should have emphasized one part
was as in "categorically", alas we don't know the full facts, muddying the waters is a complete anathema to rigorous answers and thus, research/treatment
but politics demands confusion and lies, to exploit and dominate
it MAY be down to governmental maleficence, or it is probably more likely to be just natural syndrome...but we cna't tell because of the blanket of utter lies and bullshit the government cocoons itself with, which has reached out to touch us a well.
all about probabilities, we know for certain that such things as M.E. could be down to human design, but it's more probable that it's natural, but this does not mean it is thus automatically "natural", far from it
way too many folk take Occam's Razor totally out of context.
He who controls your health, has you by the balls. They know this, they exploit this, so health is an area of great governmental interest for non-altruistic reasons.
But it's such a mess, no Mr Big Bad Evil Guy, no super plan of world dominance (tm) just loads and loads of mess
so it may never be possible to know why they decided to "squelch" M.E., indeed that they may have done so totally erroneously out of fear, or just because that's the Standard Operating Procedure.
Don't they call these things scrambled egg - and equally goes down in one and out the other end happily rapidly.
Just plain bizarre, but not totally unexpected. He's a waste of space. If it isn't obvious, Wessely has simply been rewarded for being a protector of the 'truth' where CFS and GWS are concerned. He used his sophisticated psychological understanding of people to create confusion, manipulate attitudes and dissolve the legitimacy of both illnesses. It was a masterclass in bending logics and distorting what is in plain sight, because the real facts re: CFS/GWS necessitated that action. It was one big experiment for him, he was assigned to do it, and he succeeded. The truth is staring you in the face, it's just not what we are led to believe or were taught to expect.
disgusting. I thought nothing could surprise me on this topic, but I really am surprised with this. I'm sure he's in the running for Nobel Prizes in Medicine and Peace and probably will be canonized by the church. Are they handing out knighthoods like party favors now? I thought they only gave them out to the heros of the heros!?!?
GWS is a not a syndrome, just a "health effect" according to Wessley in this article. Haha, like ME is "chronic unwellness."
If someone wants to organize a protest, my offer to chip in $250 stands.
If you want to read about internal UK coverups, lack of transparency and accountability, may I suggest the book by the investigative journalist Heather Brooke, The Silent State. http://www.amazon.com/gp/reader/0099537621/ref=sib_dp_kd#reader-link
I think you will find - and yes I did say I wouldn't comment on GWS - but from the testimony that I believe Val posted earlier in the thread - what Wessely was saying was that on the basis of reported symptoms alone - there was no evidence that 'GWS' was unique. That the same symptoms were being reported by other veterans from other war-zones.
That was based on his epidemiology. The work that he completed prior to his testimony - so prior to 2004 - and in the context of that work. I seem to recall from what I read (there were some 56 pages in all I remember), that some 50 symptoms overall were recorded from various wars and various veterans.
Of those the main ones appeared indistinguishable from those reported by patients with Chronic Fatigue Syndrome. He was talking about reported symptoms; and as I said above his point was that there appeared no unique or obvious cause that could at that time be applied specifically to the Gulf War.
He - I think - compared it to AIDS. Saying something like how obvious it was that with that epidemic there was something unique causing the various outbreaks and the symptoms themselves were indicative of that. His point was that with GWS he had not seen a similar startling occurance originating in a specific cause. Or something.
I dare say I shall be kicked in the teeth for that little summary, but so be it.
Secondary or primary? I mean other diseases have mental symptoms too. Does that make some types of cancer mental disorders (including cancers that aren't in the brain)?
The mistake is making hypotheses in any particular direction while the underlying science has not been shown. The majority of the underlying science suggests immune dysfunction (not to be confused with autoimmunity), following infectious triggers.
As for Wessely, it just seems strange to me to give an award to a man in a field where there has been a distinct LACK of progress for a long time. Wessely hasn't really pushed the science towards a point where significant breakthroughs could have been made (in GWS which is what he received the award for).
This is true of course - the mistake part. And I think you mean immune dysfunction is a likely cause of ME not of necessarily all the 'mental' aspects that some (or all) of us endure.
I was going to reply to one of Hip's previous comments about this as I felt it was pertinent to my own experience. I do think though that some 'reactions' that occur are perhaps the kind of things that any with a chronic illness will experience - so not indicative of any one condition.
There is a problem of course in trying to prise apart how we as individuals and collectively experience a chronic illness from what that chronic illness actually is and causes. This is perhaps harder when the cause is unknown or the condition itself has no clear model.
Anxiety - acute anxiety - for example can happen to anyone at any time and it can manifest into feelings of despair, to over-sensitivity, and to paranoia - but as a symptom of something of a specific disease? Not so clear-cut is it? I would say it has more to do with how we as individuals cope with a condition that is debilitating and chronic - i.e. of long and undefined duration.
Indeed some of these 'mental' aspects are as likely to be diagnosed separately - and rightly so. There is though a blurring when it comes to the way in which - the extent to which - something like e.g. depression can affect one's cognitive ability compared to or in conjunction with ME or MS.
Essentially though, in clinical practice, the treatment is the same. Largely you learn to cope - with help if you can get it or it is available - or through perseverance and acceptance. I do wonder sometimes to what extent our debilitation is affected by our coping abilities.
I used to think my own were very good. But you get a virus that doesn't resolve, you throw in pressures from work, a desire to return to work, a stop-start return to work, etc. etc. and the only advice from medics 'to rest' - and it can and does diminish one's ability to handle even the smallest challenge.
Not that challenges are avoided but the effect that 'life' can have on the chronically ill only compounds the illness and the psychological processes involved. IMO.
I agree completely!
But the problem is that some researchers, certainly including Wessely and those he has worked with, will frequently diagnose depression, anxiety, somatization disorders, hysteria, and other mental health issues based solely on ME symptoms. And, conversely, may diagnose CFS based on symptoms of a mood disorder combined with a rejection of mental illness by the patient, in order to avoid confrontation regarding beliefs.
The result is a rather huge mess where a diagnosis of CFS means very different things for different patients.
But Val, he/they/anyone is entitled to do so. Until such time as the golden goose that is science lays it's egg and indicates a cause, or a more amenable model - the prevalent symptoms will dominate in terms of both diagnostic criteria and treatment.
As I have said before - and only use as an example as I've been reviewing Newton's recent presentation - but if you get a diagnosis of autonomic dysfunction and research leads to a treatment - according to Newton this could explain and relieve many if not most of the symptoms most reported as debilitating by those of us with ME and/or/whatever CFS as a diagnosis.
What then becomes of ME?
Interestingly, and I know that Wessely and colleagues are often 'queried' over their use or reliance on questionnaires - Newton in the presentation had employed them to reach conclusions that showed greater autonomic dysfunction in CFS/ME than in controls, in Fatty Liver Disease and in Primary Biliary Cirrhosis; but who are defined collectively as fatigue-associated diseases. Sjorgen's Syndrome was another disease mentioned on a separate reported outcomes slide.
The way things are going I do wonder at times if we won't all be diagnosed with other things and treated separately, leaving ME as being..... something less than it was thought to be? I don't know.
Questionnaires certainly have a place in research, but need to be used in a way that is sensitive to the characteristics of the disease. Wessely & co consistently fail to use them intelligently, and perhaps even select questionnaires based on the high number of physical symptoms used in them.
I think where an alternative exists to questionnaires then it/they should be used; however questionnaires apparently have their place. Of course like (even) RCT's the nature of the research (and the means by which results are obtained or indeed the data collected e.g. with questionnaires) and the questionnaires themselves can be called into question/critiqued.
Nothing wrong with that. There are though 'industry standard' questionnaires - some of which Newton referred to in her presentation for collecting of data for orthostatic intolerance I seem to recall. If a new questionnaire is designed - and some that are used in 'fatigue' data collection; some in psychological studies; and we aren't talking about simple questions and answers here but those backed by statistically significant and mathematical interpretations/formulae even I think algorithms (what I mean to say is that the ones employed are in general carefully considered).
Again, the significance of the content and it's interpretation is/are 'fair game' to critique. But I don't think we can generally say that employing questionnaires in a study means the results are necessarily inferior. Depends on the context and any available comparison; and with ME at present a great deal has to be based on symptoms reported and extracted by/from patients...
They claim to be scientists they should be trying to define better criteria for conditions rather than accepting overlapping symptoms where they basically make a choice based on their feeling. They should not be entitled to make such vague choices based on such a feeling. And they should not be entitled to get away with developing science that lacks a specific nature and language that supports this vagueness.
If one symptom comes from another causes then it doesn't make sense to treat it separately although you may have separate management strategies. Here we need three separate notions, one of direct causation i.e. that symptom comes directly through that mechanism, one of a secondary result (perhaps depression with chronic illness or infection with a weakened immune system) and then entirely separate (e.g. cancer and ME). To deal with the first you need to understand the disease and how to treat it. To deal with the second then you could for example treat an infection which would be necessary for someone with a weak immune system but it is not a solution to the problem it is just a stop gap till the next infection happens. You could have management techniques such as a clean diet that reduce the chance of infection. But until you deal with the main issue you do not have a solution. The third class seem to be separately treatable appart from the need to look for interactions (for example if someone has heart disease and cancer they might not be strong enough for certain chemo therapies).[/QUOTE][/quote]
I think this is substantially correct, but it misses the political side. Its just dry accounting. ICD is used by insurance companies. That affects medical insurance, which affects medical delivery, which affects patients. This in turn affects government policy. ICD is not a scientific "truth" but it does have profound political and social implications.
I suspect this is much less of an issue in the UK than other countries as people don't tend to rely on health and unemployment insurance and products are quite limited. However with the current governments policies it might become much more of an issue.
... Yet. There is a move to make a lot of this privatized in the UK. Insurance and medical provider companies want a share of that pie.
Has anyone heard of ATOS? How about privatization of hospital services? ICD is just one more factor that is becoming a political football.
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