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There was a case in my local area where a cancer faker had garnered much support from the whole town. Fundraising events and donations had amounted to over $150 000. People were devastated and justifiably angry at being conned.

Yes, sadly he has played his game well and it is only in more recent years that many patients have become aware of what he believes about this illness. He seemed to start well with the Dubbo studies, but his conclusions soon changed. When infection couldn’t be found and he had input from the UK...

We knew about the lowered threshold before the release of the data. We just didn’t know whether anyone deteriorated from entry and was counted as recovered.

At the moment Andrew Lloyd is considered by the government to be the “expert” to consult on this illness. The government likes that it can deny disability pension and the national disability insurance scheme on the basis that ME/CFS is not permanent and can be cured with CBT and GET. There’s a...

Clauw is all about central sensitivity and functional disorders, very much MUS related. :banghead:

A doctor once said to me that what I had was an illness - and by that he said he meant he accepted that I didn’t feel well, not that there was something physically wrong with me. I never know when a doctor uses the term illness, condition, disease or syndrome what they actually mean by it. It...

sci hub doesn’t seem to be working for me :(

I prefer to work all day and hike and cook and sew and ... Alas, I cannot. I choose to lie down to avoid payback, but I’d hardly call it a preference.

It’s not a matter of being convinced. I don’t think Jonathan is in any way dismissing your experience. He’s just saying that there is more than one possible conclusion, and that without scientific trials we can only have correlation not definite conclusions. It sounded to me more like he is...

I don’t know what the issues have been, but I do know in general that the attitude towards ME/CFS in Australia hasn’t helped. Australia doesn’t have an insurance system for seeing doctors outside of hospital care. There is a minimal government rebate which leaves a huge gap for anything longer...

He has tried for at least 10 years to find a doctor willing to learn and replace him. Several have come and gone in that time but no one has taken on the challenge to continue the clinic. Apparently his own poor health is the reason he cannot now continue

There is already a wealth of information on how people with other illnesses respond to a CPET. It has long been known that the CPET is reliable and repeatable with little difference between tests on consecutive days for healthy people and those with a range of illnesses. That’s what makes it a...

I th I noticed that as well, but then thought given the day 1 results it didn’t look like PEM. I agree it is a concern though.

This conclusion doesn’t make any sense to me. Work rate (WR) at VT is physiological not determined by how much encouragement is given. The fact that verbal encouragement results in higher peak WR doesn’t have anything to do with when VT occurs. Patients have met criteria for maximal effort in...

Welcome @anciendaze nice to see you here :)

It is deliberate. The government’s “expert medical advisor” for ME/CFS is Andrew Lloyd.

In animals “sickness behaviour” is taken as a sign that something is physically wrong that needs to be diagnosed and addressed. An animal who chooses to sleep more and exercise less is not treated with CBT and GET. In humans it is becoming much more common for sickness behaviour to be...

What makes you think of linking the 2? I haven’t heard of blood volume being tied to physical conditioning before

There’s CBT for that.

Absolutely she believes being a patient is a role. That’s why they don’t want to see patients given disability support or useful aids because it reinforces the “role” The cure obviously is to stop believing you’re ill, stop “acting” as a sick person