Friday, January 29, 2010


I'm posting a comment written by someone else today because I couldn't find a way to say it any better myself - and the more I allow the reality of what this means to sink in, the more stunned I am. People with ME in the UK have literally been sacrificed by those who have more power - and they have enough power to ensure that the way in which their decisions have been made are to be kept secret from the public. OK, here's the post by Andrea Pring; more from me below. 

"M.E. is all over the news today. So glad to see that the subject matter is being given the serious reporting it deserves. However, instead of discussing the niceties and legalities of assisted suicide, what they should be asking is why a young woman was allowed to lie and rot in that bed for17 years with no proper medical care. Perhaps now the country will see how medically neglected sufferers of M.E. are. The psychiatric element has claimed this illness for their own vested interests and as such those who are suspected of having the illness in the UK are DELIBERATELY given inappropriate testing and treatment. Doctors are advised NOT to test for the very things that will show the biological damage that exists. Damage to the heart, brain, spine and nervous system. A simple tilt table test would show how our heart and circulation is impaired but this is one of the very tests doctors are advised NOT to administer.

The corruption goes very deep so deep that in fact there are secret MRC files on M.E. held at the UK Government National Archives at Kew. These files contain records and correspondence dating back to at least 1988 (which is the period when M.E was given psychiatric status in the UK, despite the fact that it was and is classified by the WORLD HEALTH ORGANISATION (WHO) as a NEUROLOGICAL disesase and has been seen as a distinct illness since the 1930's). Initally closed until 2023, this period has now been extended to 2071. The normal closure period is 30 years. Curious?"

You can find the original post here:

The records that have been closed to public view can be found here:

The file is: 

FD 23/4553   Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS) : papers and journal articles; correspondence and enquiries with MRC replies

.... and these files have been closed until 2071. Why? Who are they trying to protect? What is going on here? Why is it in the public interest to close these files? I would like to encourage anyone reading this who lives in the UK to contact their MP and the national press about this. 

Thursday, January 21, 2010

Selection Criteria

For anyone wondering why the recent study carried out in the UK failed to find the XMRV virus, the following piece may shed some light on the matter. I don't know who Peter Kemp is, but I'd like to thank him for writing this!

I wanted to study the nature of penguins.
by Peter Kemp

The 'Canadian' definition of penguins is that they are:

They can swim
Largest species up to 1.2 metres tall
They eat mostly fish
They lay 1 or 2 eggs
They generally live in colonies

The 'CDC' definition of these birds is that they are:

They sometimes eat fish
They lay eggs
They can swim

The 'Oxford' definition is that these birds are:
They lay eggs

The 'Oxford' criteria was chosen for the research as the others were
too difficult to apply. 100 subjects who met the research criteria were studied in
Sub-Saharan Africa.

The research found that penguins:

Live in deserts
Cannot swim
Are up to 2.4 metres tall
Weigh 200 pounds
Capable of speeds up to 40 mph on land
Are mostly vegetarian.

The research has discovered the truth about penguins. Those funny black and white
birds waddling on the ice and swimming in the sea are making fools of everyone.
They are not real penguins and should be excluded from all further research into

Monday, January 18, 2010


The situation in Haiti is beyond desperate, beyond description. Hundreds of thousands killed. Please give generously, give today. Links to both Doctors Without Borders (Medecins Sans Frontiers) and Partners in Health on this page.

Monday, January 11, 2010

Here I am with a couple of Couch Surfers, Jane from Queensland, Australia, and Jenna from St John's, Canada, who stayed with me for a few days shortly before Christmas. They were followed by a couple of young men, Josh from the States and now resident in Germany, and Malik from Pakistan, now resident in Sweden.
I'm a big Couch Surfing fan. Like many others, when I first heard of it I thought "great - a free place to stay!" I quickly discovered that the 'free' side of it was the least important. The best aspect is making new friends and getting to know a place from the point of view of a local person, especially when your host has some free time to show you around.
Now that I'm largely housebound, hosting Couch Surfers has become a significant element of my social life - this is how I travel and meet new and interesting people. I pay a price. One of the worst ME symptoms I have at present is 'brain fog'. This is a kind of fuzziness - like a combination of a really bad head cold with your worst-ever hangover - that invades my head. The more I talk, and the more noise there is around me, the worse it gets. One moment I'm enjoying an animated conversation about the horrors of loud snorers in youth hostels, the next moment the snoring is reverberating inside my head and I'm forced to retreat like someone with migraine. But it doesn't go away. And even though I only enjoyed having guests for five days my poor old head is still buzzing and fizzing and pining me in place, glued to the couch all on my own, wondering when the fog will clear.

Friday, January 01, 2010

People with ME tend to avoid parties, so I stayed in as usual last night and indulged by watching “Love Actually” for the zillionth time. In the early hours my cat Fynn held his own private football match with a ping-pong ball that ricocheted noisily across the tiled floors and limestone walls. I had decided against the earplugs, which help me sleep but also sometimes make me worry about what necessary noises I might be missing. I’ll be in good company around the world with my fuzzy achy head this morning. If you over indulged last night and are feeling the worse for wear today, keep in mind that for most people with ME this is how we wake up feeling every single day of the year.

"Once in a blue moon" - a full blue moon over St Paul's Island, early morning, 1st January 2010.