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I see what you're saying @Inara, but in these cases the families could be punished by our actions. These guys like to isolate their victims and claim the reasons the families don't just comply to the demands of the authorities is because they have been mislead by militant activists. We need...

That is entirely possible. What I'm trying to say,is that those providing that treatment (i.e. the non NICE guidelines) would make excellent witnesses regarding the dangers of PACE style CBT and GET. They have adapted their approach to what works best for the patient. However, it might be...

No. I mean that people who work for the NHS may be afraid to rock the boat acting in our favour with NICE. We've discussed on other threads that therapists at some CFS clinics are implementing their own version of NICE guidelines, for example non PACE - CBT. Or pacing and activity management...

Absolutely. We could do with identifying quality of fatigue as well, in my opinion.

This thread might be of interest: https://s4me.info/threads/chronic-fatigue-syndrome-underdiagnosed-or-misdiagnosed-opinion-by-dr-rajendra-sharma.2198/

Something for the archives @Cheshire or @Woolie ?

As per usual, the snag is it needs to be someone who doesnt have to worry too much about a paymaster i.e. the NHS

It depends how you define it for a start..... I certainly can't speak for your country,but in the UK the estimate is about 250,000 ( I have seen some say it may be lower at about 125,000) We have seen attempt to inflate that figure to 600,000 by conflating it with chronic fatigue. Under...

It seems that this problem is far from insurmountable, if there is the will to manage it. Even a simple traffic light system: green - its all good, amber - caveats that there are criticisms that need to be considered, red- the conclusions cannot be relied upon. Links to the criticisms easily...

Under MUS - 5 KEY FACTS heading It says that misdiagnosis rates are the same as for other neurological disordefs 4% at 5 years. Not entirely sure what they mean by that,but it sounds at odds with the 40+% currently found by CFS clinics. This figure is attributed to Stone, Carson 2015. Now I...

And how much money has actually been saved? The cost of assessments has gone up - the likes of ATOS, Capita and Maximus aren't doing 'em for free. I would love to see what the cost of the average assessment was before the 'reforms' and after. Just how much do these private firms make from...

The article here and in this thread are rather light on detaiis: https://s4me.info/threads/me-generation-want-better-care-across-scotland.2178/#post-39622 Thanks for your hard work @Nasim Marie Jafry and I know Emma Shorter has done some great advocacy work too. I am wary of general calls...

I worry about this..... They are asking for more care or enhanced care..... The establishment will see that as asking for more CBT/GET. Cause thats pretty much all that's on offer and this gives them the excuse to say it's on offer by popular demand. Now, if they were asking for proper...

I wonder just how much of this is about people protecting and trying to justify their jobs. They don't want their gravy train to shudder to a halt. It doesn't seem to matter that they're continuing to destroy other people's lives rather than go do something actually useful.

:rofl::rofl::rofl: Is that a freudian slip @Cheshire? I admit reading his kinda guff does cause me extreme iredness!

Well....you could either retire or go off and work in some entirely unrelated fields.

Yeah. SNRI. Knew I had the right letters but couldn't remember the order :confused: I can't remember which ones off hand. I heard about others getting great pain relief and improved sleep and so my consultant and I worked out a list of the best SSRIs SNRIs and tricyclic to try. We discovered...

From my own experience - i would have been about your son's age when one of my parents became very ill with a chronic health condition. Being open and allowing the child to ask questions, and for them to know it's okay to ask questions, makes a big difference. As long as he is coming to you...

Looks interesting. @Woolie or @Cheshire is this something for the library?

I certainly think its worth trying most things to get a little kip but Ive learned the hard way not to be too optimistic. Literally everything I have tried that's supposed to aid sleep wakes me up after a tiny window of very slight drowsiness. Ive tried herbal remedies, chamomile tea, old style...