Showing posts with label research. Show all posts
Showing posts with label research. Show all posts

Saturday, 5 January 2013

YES!! Knighthood!

I'm writing just a short post today, mostly in reference to my most recent post. I provided you the link for the petition against Dr Wessely's proposed knighthood, should you wish to sign it, and explained why I find myself a little reluctant to do so.

Someone came up with a beautiful alternative. Well, they didn't intend it to be an alternative actually, they suggested both signing that petition, and ...  doing this:


As I understand it, when someone is proposed for a knighthood, they are compared with others in the same field who have also been nominated. I could be completely wrong in that, so don't quote me on it, but I think that is what I have read somewhere.

My immediate reaction was to suggest the wonderful journalist, Sonia Poulton, for her hard work writing about M.E., describing it's difficulties so perfectly within the public eye. She's become patron of the Cheltenham "Fibro, ME/CFS Babes & Guys!" group you know! I would also personally include her awesome work raising awareness of how screwed up the benefits system is. You can read some of her work:
here
BUT, I have a sneaky suspicion that because Sonia Poulton is a journalist, she would not be considered comparable to The Weasel. In fact, she's raising awareness of how treacherous M.E. is, when he is (supposedly) performing research (and downplaying how serious it is). Plus, it is not just M.E. alone that he is being considered upon.

Someone else has suggested recommending Professor Hooper for knighthood instead. I felt a little embarrassed that I had never before heard of Hooper, so I did a little research. A few clicks later I had found that he has worked on M.E. (CFS) and Gulf War Syndrome amongst other conditions; so he is directly comparable to The Weasel. He is the Medical Advisor to the Grace Charity for M.E.; I would be very surprised if any M.E. organisation is associated with Wessely (unless it is one that he has created). Hooper has also stood in direct opposition to Wessely on his stance towards M.E./CFS, which of course will make him a very attractive alternative to many. I did also find, however, that there has been a review into him, and that there are also people who dislike him as strongly as I and many others dislike Dr Weasel. Personally, I don't feel that I have found out enough about him to recommend him for knighthood myself. But I would certainly say 'yes' he's a good alternative to ... you know who ... and that if you wish to recommend someone to be in direct opposition, then Professor Hooper is probably the right person for the job.

I, myself, think I will stick to recommending a certain journalist. I have a feeling she might turn down the post if she was offered it. That, however, would be as worth seeing, as seeing her receive it!

So, how do we go about recommending someone for a Knighthood? It's actually very simple.


There is a choice of format in which you can download the form. I would suggest PDF, as most computers have a PDF reader. You then print the form out, fill it in, and post it off to the address on the website. Couldn't be simpler, could it? Well yes, since the form is rather long and complicated. 

... and sitting on my desk still waiting to be filled in.

Wednesday, 19 September 2012

ME / CFS Research Newcastle

ME / CFS Research Newcastle has created a page on Facebook, which you can follow here:



They have today posted a summary of the study they have proposed to the ethics committee. It is thus:

Chronic fatigue syndrome (CFS) occurs in 0.2-0.4% of the population and currently its cause is unclear. Abnormality of the autonomic nervous system is recognised in 3/4 of CFS sufferers and we believe that it underpins many of the symptoms that are characteristic of CFS. Autonomic nervous system dysfunction is characterised by symptoms of dizziness on standing, symptoms present in nearly 90% of people with CFS. Despite this, why autonomic dysfunction occurs in people with CFS is not understood and as a result treatments limited. This study will explore what leads to autonomic dysfunction in CFS particularly whether it occurs because of abnormalities in centres in the brain that control the autonomic nervous system, or, due to a peripheral volume or vascular problem. In non CFS diseases, autonomic dysfunction has also been shown to be associated with memory and concentration problems (cognitive impairment). Over 80% of those with CFS describe problems with memory and concentration, so this study will also explore whether there is a relationship between autonomic dysfunction and cognitive problems.

The programme has two phases:
1) we will use new ground breaking brain magnetic resonance scans that will allow us to study brain function in CFS and how this relates to problems of blood pressure control (autonomic nervous system) and memory and concentration (cognitive function).
2) we will explore whether cardiac or blood vessel function might contribute to autonomic dysfunction in CFS.

As it happens, I was going to speak to my doctor tomorrow about the problems I have when I stand up, so was interested to see that this is part of the proposal. (It also told me that there is no treatment for it, so little point in my discussing it with my doctor after all). I did actually think that it was already established that cardiac or blood vessel function contributed to autonomic dysfunction; it's listed in the International Consensus Criteria for M.E. as 'Orthostatic Intolerance'. So I shall look forward to seeing the results on this.

I will also be very interested to see what the study shows regarding concentration and memory.

Newcastle may be a long way from me, but I do wish I could volunteer for the study.

Monday, 9 July 2012

Under-funded

Not sure of the stats here, but willing to bet it's similar. Too tired to do the research.