notinfinite
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Please tell me SW DID say the "warzone" thing ..........
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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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I can't understand why you are so focused on the psychiatric (non-)aspect of ME, and so adamant that we make senseless concessions to psychiatrists that are not required from patients with other non-psychiatric disease.
IVI you said
"The only way forward is engagement with psychiatric services in seeking better inpatient care in psychiatric settings fro people with M.E/CFS. A simplistic anti psychiatry appraoch is not going to change anything."
Are you serious or having a laugh at our expense?
M.E/CFS is not a prophylactic against mental illness. IVI
IVI you said
"The only way forward is engagement with psychiatric services in seeking better inpatient care in psychiatric settings fro people with M.E/CFS. A simplistic anti psychiatry appraoch is not going to change anything."
Are you serious or having a laugh at our expense?
Yes - I find it puzzling that other people don't get this. It makes me wonder about those who want to cast the whole thing in conflict terms, as to whether they've ever had to (or have chosen to) deal with or engage with actual conflict and the costs that involves. Fighting (whatever the context) takes up huge amounts of energy and other than in the constrained context of regulated martial arts, the potential for colateral damage is immense. Most of my direct experience of conflict has 'luckily enough' been 'in the ring', (a long time ago) or in the somewhat group protected arena of politics (not that there wasn't a deal of right wing thuggery to face down on occaision). Something I'd say was a near constant truth is that those who are most enthusiastic for a fight, are usually never to be found when the time comes to actually take a beating. Macho posturing arouses my strongest sceptical sense. I can already hear the cries of 'but we are already taking beating' to which my response is - the opposition has barely stirred, if you don't like things now, what makes you think you can cope with 'toe to toe' ?If you want to view this as a fight then use a fight analogy, you can't stand toe to toe and slug it out with the psyc's, they have access, funding and influence we could only dream off.
What I belive IVI is pointing out is that we're the only loosers by continuing on a failed path of angry opposition, we're not even close enough to bang on the door let alone sit at the table, and everytime we feed another media frenzy with careless and foolish claims we cant' substanciate, we take another step away.
I think that should be writ large over every thread like this one.What do you want, better treatment, research toward a cure, or some notion of revenge.
But aside from 'ME' and those trials and tribulations - I am not immune from having a separate mental health crisis. To believe that I am would be stupid. Anything can and does happen.
It's very serious indeed and I'm very disappointed that you should have lowered the tone of the discussion in this way.Sorry. Serious debate I am sure. But, well, that made be LOL as well as being true of course.
In principle a survey could be congruent with the scientific method. Personally I'm doubtful that the use of 'experience' surveys as in PACE etc meets full scientific rigour, which is one reason why I would never defend PACE as being 'science' (although I think it works as referenced to EBM and shows the interventions for what they are - not very useful). Bias isn't actually the problem - it's that lack of any means to measure the bias that is the problem - but of course it amounts to the same thing in practice. It is also, for what it's worth, why I'm agrieved at Wessely getting his prize - I just don't think he's stood up for science, because the content of his work is not 'science', although it may still have clinical value in the absence of science but that involves a different measure.IVI, if surveys are hearsay, so is all ME related psychobabble ... they rely primarily on questionnaires, their patients are not properly categorized, the questionnaires have dubious validity for ME, patients are coached for a year or more on attitude then asked to fill in an attitude questionnaire .. the inherent bias factor is huge.
These should be considered as sociological data, as sociological conclusions, and subject to sociological scrutiny ... but I agree its not science. In either case. It is evidence though.
So in a limited sense I agree with BPS ... there is sociological perspective, including the failings inherent in current psychopsychology practices.
Where has anyone dismissed any personal experience ? My point to you, is that you have invoked personal testimonies in the cause of an argument that those testimonies can not support. The key information comes down not to the individual testimonies but to the validity provided by collated data. In this case – how many people were surveyed, and how were they selected, and who (if anyone) provided a diagnosis of M.E/CFS ?.It is of great concern that the experiences of both adults and chidren who have been put through medical abuse due to the atrocious ME policy in the UK - that the firsthand experience of the abuse has been rejected and denied by members of this forum.... or dismissed as 'emotive'
Excellent back to good old ad hominem ‘question the integrity of the poster’. As it’ll give me a wry smile (not a laugh) I’ll reply in kind by asking if this is just a tactic to avoid answering a difficult question ? –I agree, maryb
Are you having a Laugh at us, IVI?
It's very serious indeed and I'm very disappointed that you should have lowered the tone of the discussion in this way.
IVI
I can already hear the cries of 'but we are already taking beating' to which my response is - the opposition has barely stirred, if you don't like things now, what makes you think you can cope with 'toe to toe' ?