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I am quoting myself - but this post of mine has more than 20 likes. They belong to @Graham - have them and all others after this post.

Sadly, not the first time I have heard a similar story. I think marketing has lots to do with it.

"A vexatious patient production" :rofl::rofl::rofl:

Just catching up on this thread. I have no words about how incredibly sad this is. Besides the GP's attitude, what strikes me about this is that how isolated people with ME and their carers can become and how separated and invisible in a community. The fact that if the GP didn't co-operate...

I can confirm that this has happened - I declined to be considered for taking part in PACE for this very reason. Twice.

Yes, I know who you are and am familiar with your work. And I am eternally grateful that despite how the rituximab trial turned out in Norway, you are still here and supporting us (and I get the impression that you are doing it for the reasons of justice, among other things - which I appreciate...

Wobenzyme is used extensively in countries like Germany and some neighbouring countries for inflammation-related problems, for example in helping healing injuries. Just because it is virtually unknown in the UK - where healthcare and NHS is very conservative - doesn't mean it is without merit.

From a purely public relations point of view, there is no need to mention 'psychological' at all, as it can reinforce the idea that it, in fact, is psychological, especially in those with pre-conceived ideas - that is just how humans work. PACE and the 30 years of dead-end of CBT/GET speak for...

Yes, that should be the case in a just and fair world. However, it is not happening and it is not likely to change any time soon. So in the meantime, we need to take matters into our own hands, as much as possible given our health limitations. Sometimes in life, one has to take responsibility...

This is actually quite a clever marketing tactics and would appeal to a certain kind of person. I had a quick look and they don't seem to have a new person every week, at least one is there twice. So maybe not so much support from patients.

Not answering or even addressing the question is also disrespectful.

Not to be picky - but I find the standard of English in the attachment quite poor. Also - "scientific journalist"?

When you are "not bothered with politics" and you are in a field that is very political, you are a tool to be used in politics by whoever wants to use you.

I have been 'exposed' to the phrase "pacing up" at a pain clinic - whose approach to pain management was along the lines that pain is not important and means nothing, ignore it, drop your medicine and do GET and CBT and back then, there was also a new revolutionary approach to pain management -...

He is confusing PIP (a UK benefit to help cope with disability when one needs lots of care and has mobility problems - and which can be an in-work benefit) with ESA (which is an out of work due to ill health benefit... meant to replace some of the lost income, it is pitifully little). If...

Don't - they would just twist it and claim it's a demonstration that "patients support what we are doing by contributing financially to our research". (call me cynical...)

Presumably the only way to understand is the way MS (and others like him) understand it... everyone else who reads the paper and comes to the conclusion that GET/CBT are not the wonder treatment/cure for ME presumably 'does not understand'.

A few years ago, there was a UK journalist Sonia Poulton whom he invited for coffee: http://blacktrianglecampaign.org/2012/09/26/me-is-no-more-in-the-mind-than-ms-professor-simon-wessely-responds-to-journalist-sonia-poultons-article/

Does anyone know which MPs will attend?

A lot of patronising nonsense. I went to a similar clinic and one of the most ridiculous 'suggestions' was to give yourself a small reward for job well done when achieving a goal. Examples of rewards included "an apple", "fruit juice" or "put 10 pence in a jar". Who "rewards" themselves with...