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Well their webpage does say: I understand the hope the ME/CFS research will lead to better understanding of a whole range of illnesses. It doesn't necessarily mean all those illnesses are connected though. I know someone who developed ME post anorexia, another post cancer. Neither of them...

Speaking for myself, there is a cut of point where I now know I am not in good shape to make decisions due to cognitive impairment. It is not that I have dementia or anything, it is simply that, on a number of occasions, I realized I hadn't factored in information that I might have considered...

So. They are deliberately misleading people from the start. We go from you will be paid $50 to you will be entered into a draw for $50. As the draw takes place after the study is concluded it may be possible that if one pulls out of the study they won't even have their name put into the draw...

I know - I'm being pernickety. It's just that cognitive dysfunction and brain fog are fairly common and significant symptoms, so they should take extra care to be very clear. One of my major bug bears about questionnaires is they frequently have poorly written (deliberately?) ambiguous...

Inclusion criteria say- Well, which is it? A cycle with a ten day variation range or a regular cycle? Questionnaires again. Though they are in addition to saliva and urine tests done at home. So the questionnaires ask They also say: 45 minutes of filling in a questionnaire would...

Oh dear..... Where would you even start to describe how poor this is? For a start not all "significant and prolonged fatigue" is the same and certainly does not equate to chronic fatigue syndrome. I would love to know what they are planning to rule out -- for example thyroid disease, anaemia...

Signed

I share your caution @JemPD, I wish I didn't but I do. Everything you fear could come to pass. However, that is a fairly high risk strategy on behalf of Tovey/Cochrane. If it went wrong it could do then a lot of harm. By even temporarily withdrawing (or saying they will withdraw) the paper...

Well done @Trish!

Clare Gerada: Errrr...hello? Exactly who do you think takes full accountability when things go wrong? The doctor who blithely goes on his/her way earning a pretty good living and giving patients dodgy advice, while hiding behind the skirts of NICE & the likes of Cochrane Or the patient...

I'm not saying catastrophization isn't a disabling and distressing issue, or trying to diminish the suffering it causes. However, from an ME patient point of view (with possible fibro overlap), I am wary of the idea of pacing and forward planning of activities being put down to...

The other thing that strikes me - where does forward planning end and catastrophization begin. If you know you have a task ahead that will require you to dig deep to accomplish it, something you have no hope of doing on a less than a very good day, isn't it going to be on your mind? Is it not...

I think they need to learn that there is no way they can even come close to imagining a life of pain, unless they actually experience a life of pain. They need to stop being so flaming arrogant! By all means they may know more about the biology and disease processes than the patient, but until...

It strikes me that all this provides the perfect means of dismissing / minimising / ignoring any complaints made by those suffering with LTC about service quality and delivery. If you're not happy, no matter how you've been treated (or mistreated) then that's your faulty perspective. You are...

I notice the description for the book co authored with Mary Burgess Overcoming Chronic Fatigue: A Books on Prescription Title (Overcoming Books) Kindle Edition Contains the following (Bolding mine) Wonder if it's worth raising this with the advertising standards authority?

Even worse, then. I've only heard of Liv Landmark through patient forums an and so was trying to be fair, give her some benefit of the doubt. Cynical attempt to exploit the sick for one's own personal gain. Lovely! Unfortunately, there's a lot of that about.

As far as I know.... There are two categories - contribution based and income related. If you're in the contribution based group then these restrictions don't apply. However, as you've not been in the country you won't have been making NI (national insurance) contributions, so you would fall...

This is true for many and at the other end of the spectrum some of us are here only at our best - we feel like company, but are too ill to cope with actually meeting people. Imagine how many conversations a "normal" healthy person has in a day. From simply thanking their barista to full on...

A trick that they've clearly learned from.the BPSers. The word recovery for example. This isn't medicine as you know it, we've stepped "through the looking glass"...

Wow! Well done! :thumbup: