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Good article I reckon- I’ve only been knowingly dealing with ME for 4 years so mainly the earlier stages are relevant to me. Some of the struggle around work she described in the denial stage for me came before the diagnosis. Bbecause I had prolonged grief about parent’s severe dementia and...

More from France then. Wondering if there are more teams across Europe doing research that isn’t on the English speaking radar.

Awareness of just how unhelpful those illness beliefs are innit.

So Mayo Clinic is basically doing to US patients what the NHS is doing to UK patients. This is why PACE is a worldwide not simply a U.K. issue.

This popped up in a search I was doing. Salford booklet for their current 6 week PACE light programme. Haven’t read all of it. https://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=43129&type=full&servicetype=Inline

Hasn’t this been done elsewhere? Is NIH only believing it now cos they’re involved

Must be fishing for activist twitter responses for next years rehash article

Dementia is the highest cause of death of women in the U.K. the costs to society are high due to people needing nursing home provision, social care. People get diagnosed with dementia at younger ages than many people realise and it is much more than mild cognitive impairment. There are...

If only leading UK Psychologists and Psychiatrists had come together to speak out publicly and reject PACE when it was debunked.

My values include not falling for anything TC espouses. I’m definitely committed to that

Worth stating that in a lot of the country there aren’t even CFS clinics. People have to get referred to the pain service where they get a generic approach.

My understanding is that illnesses that can cause abdominal pain, pancreatic cancer for example has much worse detection rates. So how can anyone morally argue that a better safe than sorry approach is inappropriate.

Decaf only and occasionally otherwise I’m more or less guaranteed a sleepless night and it’s consequences

The NICE guidelines don’t mention MRIs. There’s a list of basic blood tests and a few things they say shouldn’t be done unless indicated. There’s no mention of alternative diagnoses to rule out. The MEA purple book covers that but not NICE. So it depends on the approach taken by the GP and...

I I usually say ME but I mean that in an inclusive not an exclusive way. I have NHS CFS diagnosis and have also been diagnosed with ME by private specialist. I’ve never been near an MRI or a neurologist. I don’t think it’s appropriate for some other person to decide that I haven’t got ME...

Ideally they should spend a week with someone with ME who is housebound, preferably someone who has no family carer and has to rely on paid care and manage their own finances. Obviously the person would have to be able to dictate how much time they could cope with having someone else in their home.

For me being too motivated to do activities is a factor in provoking malaise. I’ve had experience related to grief 15 years ago of not doing stuff due lack of motivation. I don’t feel the same when I can’t do stuff due to ME.

Maybe I’m over simplistic but to me fatigue is when you have to go to sleep. Occasionally if I’ve had some bad insomnia nights I get to a point where I’m so sleepy I have to go to bed at 8 or 9 pm which is totally abnormal for me. But the main thing is permanent lack of energy resources...

Is this another way of saying patients should be activists. But obviously they can’t say activists because that has already been used for bad patients with opinions. Ironic if they’re using guerilla for good patients with opinions as normally the establishment isn’t too keen on guerillas...

Yes excellent list @Kitty I would say two other red flags are using paid holiday to cover days when you’re actually unwell, if you’ve got a job where working from home is possible, working from home but you’re actually answering emails and doing phone calls in bed.