Firestormm
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Well it looks like at least two known 'advocates' are indeed choosing to question his claims relating to unacceptable harassment. No wonder my post irked.
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Bob, it isn't that articles like this don't disappoint me. It's the reactions to them from idiots of the sort referred to by Max that make me angry. I mean, yes, we could stick our fingers in our ears and pretend that there were no 'threats' of course - that's always an option.
If people start questioning the claims relating to obtaining Max's home address etc., the ones that prompted him to take steps against further harassment - it will not see 'us' heading in any positive direction. Indeed, it will - once again - serve to undermine any positive measures 'we' have gained from 'advocacy' (how ever the hell you measure that).
Clearly Ian, and others don't agree. But look at how the 'death threats' are still being dragged out and used today. Hardly a ringing endorsement of any 'community' action or spirit or indeed sanity.
Patient's with ME and their carers might indeed and quite rightly express their frustration at such articles - buoyed no doubt by the circling meme across forums and the like - but there is a clear line that shouldn't be crossed and the great majority don't. But clearly some do and clearly some feel there is nothing wrong with it.
Indeed if I recall correctly, such 'threats' and 'intents' as perhaps are being reported by Max are the target of new legislation going through the system following (or before) that incident with Tom Daly at the Olympics. And being disabled is no excuse and I don't really think that his article constitutes a 'hate crime' either - do you (peoplewithme.com)?
So I was suggesting that people didn't comment at all on that aspect of his article or certainly refrained from asking for 'proof'. To do so would be pointless and would only be seen to add to his argument and vindicate his article.
Of course to condemn those behind such 'attacks' will see some 'members of the community' denounce me (and others) as being a 'traitor' I have no doubt. But such is life in this wonderful world.
Reading through the 'recommended' comments beneath his article you really have to wonder if there's any point replying to such articles at all. Do these comments change anything? Indeed, does Max's opine change anything? Is it important in the grand scheme of things? Am I any worse off tomorrow if I missed his article today? Will my treatment by the NHS be affected?
I looked at the comments on that article and felt it was pretty futile to weigh in at this point. No sane person would wade through the ten pages of largely factless bickering (on both sides) to get to any new comments. Presumably in there *someone* thought to quote Lipkin himself on whether he thinks it's a 'real disease' or psychological in nature, but nobody will see that either. What a mess.
Bob, it isn't that articles like this don't disappoint me. It's the reactions to them from idiots of the sort referred to by Max that make me angry. I mean, yes, we could stick our fingers in our ears and pretend that there were no 'threats' of course - that's always an option.
If people start questioning the claims relating to obtaining Max's home address etc., the ones that prompted him to take steps against further harassment - it will not see 'us' heading in any positive direction. Indeed, it will - once again - serve to undermine any positive measures 'we' have gained from 'advocacy' (how ever the hell you measure that).
Clearly Ian, and others don't agree. But look at how the 'death threats' are still being dragged out and used today. Hardly a ringing endorsement of any 'community' action or spirit or indeed sanity.
Patient's with ME and their carers might indeed and quite rightly express their frustration at such articles - buoyed no doubt by the circling meme across forums and the like - but there is a clear line that shouldn't be crossed and the great majority don't. But clearly some do and clearly some feel there is nothing wrong with it.
Indeed if I recall correctly, such 'threats' and 'intents' as perhaps are being reported by Max are the target of new legislation going through the system following (or before) that incident with Tom Daly at the Olympics. And being disabled is no excuse and I don't really think that his article constitutes a 'hate crime' either - do you (peoplewithme.com)?
So I was suggesting that people didn't comment at all on that aspect of his article or certainly refrained from asking for 'proof'. To do so would be pointless and would only be seen to add to his argument and vindicate his article. Of course to condemn those behind such 'attacks' will see some 'members of the community' denounce me (and others) as being a 'traitor' I have no doubt. But such is life in this wonderful world.
Reading through the 'recommended' comments beneath his article you really have to wonder if there's any point replying to such articles at all. Do these comments change anything? Indeed, does Max's opine change anything? Is it important in the grand scheme of things? Am I any worse off tomorrow if I missed his article today? Will my treatment by the NHS be affected?
Here's one for you: maybe Max is in cahoots with that arse from the Daily Wail and together they decided he would respond to Sonia's article? Two pronged attack? Hmm...
How can opposition to a psychiatric definition be considered evidence that ME is a psychiatric disease? That's absolutely perverse.
t.
This is a claim there is a severe misunderstanding and that many people, including professionals and authority figures, reply to any difficult situation with a dogmatic answers regardless of whether they know the answer or not, and frequenty its just a hope they got it right. Its the same issue that lets people believe in the hypothetical disease hysteria. "We don't know what is wrong, but maybe its hysteria, a hypothetical disease" is not what they say. Rather than acknowledging the unknown, saying "I don't know" these authority figures try to present the image that they know. Thats deception. Its a lie.
But a psychological explanation doesn't make sense if you actually know someone with this illness and see what their lives are like.
There is no substantial evidence that ME is a psychological disease. But plenty of evidence otherwise.
It's really not a hazy subject.
The presence of cognitive symptoms do not necessarily indicate a psychiatric or psychological illness.
For example, MS, Parkinsons, AIDS, cancer etc., can all have cognitive symptoms.
It is vital that a disease is correctly understood, so that it is treated appropriately, and the research is effective.
What is the point in carrying out psychological research into a physical illness?
The PACE Trial and the FINE Trial were perfect examples of this.
The FINE Trial demonstrated that CBT and GET are completely ineffective for ME patients.
The PACE Trial was similar, although it used a 'chronic fatigue' recruitement criteria.
The PACE Trial demonstrated that CBT and GET only benefited 13% of patients, at best, using subjective assessments.
For objective assessments, CBT and GET were not clinically useful.
No substantial evidence that ME is a psychological disease? Low b vitamin levels, low magnesium, neurochemical imbalances. All of these things are impacted by stress; ok it might be environmental, food related, physical malfunction, virus and/or bacteria. We still run mental processes that impact on stress.
If its not hazy, please feel free to cure all the sufferers. If evidence hasn't elucidated a consistent cure, how is it evidence? Its just a potential marker.
Depression, anxiety and stress all have physical symptoms too. If someone is badly depressed, they have chronic fatigue too. Stress can impact us through each input, dealing better with stress will help you not matter whether you have a chronic illness or not. Its even more important to learn better ways to cope or manage for chronic illness patients so they don't burn out what little energy they have.
No substantial evidence that ME is a psychological disease? Low b vitamin levels, low magnesium, neurochemical imbalances. All of these things are impacted by stress; ok it might be environmental, food related, physical malfunction, virus and/or bacteria. We still run mental processes that impact on stress.
I think theres a very real reason why theres an avoidance of psychology with CFS/ME, because its bloody hard. When the body fires stress warning shots for seemingly no reason stress wise, its hard to actually deal with psychologically;
My grandpa gets married when hes 60. At 62, she splits up with him. And he has a heartattack. Physical cause, yes, contributing psychological factor yes. As its a multi-system malfunction, which involves stress responses it makes a lot of sense to wear out psychological avenues. Clear cut saying its only a psychological disease or physical illness is narrow-minded.