Boring Science Stuff or Political Intrigue?

I am an absolute dimwit when it comes to science. With that disclaimer out of the way, let's talk about science.

The only one story in town right now for the M.E. community is that Science journal asked Lombardi et al to retract their seminal paper on XMRV and the potential link to M.E. The journal also published and Editorial Expression of Concern. Thankfully, Lombardi et al have categorically refused to retract.

Did I mention I was a dimwit when it comes to science? Never hurts to re-emphasise the point. However, even this dimwit can see the absolute logic in what Dr Deckoff-Jones had to say HERE:

"It can't be both a contaminant and not there at the same time. Which is it?"

Indeed.

You can read Dr Deckoff-Jones' frank and unflinching views on what's going on in the link I posted above. As always, she shoots from the hip and doesn't mince her words. I admire that.

For a while I've had the dilemma of which organisation to support with donations and who to root for in terms of hopefully one day finding a cure so we can all have our lives back. This has now become irrelevant for me. It is no longer about whether the WPI are our saviours or whether XMRV will be the big breakthrough that leads to meaningful treatment. It is about the little guys with good intentions being bullied by the powerful.

The consequences of the WPI being 'taken out' are significant. This goes way beyond the money Annette Whittemore has ploughed into the Institute and it goes way beyond our illness. Even this dimwit knows that science is full of cases where the original discoverer is discredited and marginalised to allow someone else to end up taking the credit (and making the money!) for the discovery. I believe this is what we are witnessing here.

All of this makes me all the more determined to support the WPI. Whether they can cure me or not, this has become a matter of principle too great to ignore. I hope others feel the same way.

Licking The Wounds

Sometimes it's necessary to retreat. To lick our wounds and admit we are fragile.

Lately, I have had to do just that. I had a birthday at the beginning of the month and have gone downhill markedly since then. I am confined to bed much more than I was previously (and even previously it was a lot!), I am unable to take care of my daily 'maintenance' tasks such as washing etc. I haven't had the strength to write to many of those who were kind enough to send birthday gifts and cards. I haven't had the strength to go back to see my doctor or to have the remaining blood tests done. I haven't even had the strength to have a telephone conversation with my own mother for the past three weeks.

I have had to abandon thinking about anyone other than myself. I haven't been able to do any work on the projects I was hoping would benefit the M.E. community and I haven't been able to support fellow sufferers in the various groups I am a member of. I haven't had the strength to take my pills some days.

All of this isn't said to gain any pity. I think there is a larger point I want to make. Actually, there are two, maybe even three!

Firstly, the personal aspect. A lot of my sense of self worth has always been dependent on my output. On what I achieve and on what I can provide others with. I am largely a rescuer by nature - trying to intercept and fix problems. The past few weeks have taught me how damaging that is to my health. I literally have the energy supply of someone who has congestive heart failure and yet I'm beating myself up for not being more supportive of others. That can't be healthy, if you excuse the pun.

Which takes me onto the second, more general, point. For all of you reading this - whether sick or healthy - do you also need to consider whether you are looking after yourself enough? I'm guessing the answer is "yes" for most of you. Please give it some thought as health is so very valuable, I realise that now. And, even if you are sick, the current level of health you have, however low, is also to be cherished and protected. Don't let well-meaning personality traits take that health away.

And finally, the PACE trials that have managed to generate so much worldwide publicity. Why is it that the mainsteam media are able to ignore most of the scandal and the meaningful biomedical research on the subject of M.E. but are so willing to swallow the dishonesty provided by a bunch of UK psychiatrists and a study that any fool can pick apart with ease? I must admit, I lifted my head off the pillow on the day the news hit, looked around me with despair at how widely it was being reported, wrote a grouchy post on Facebook and went back to sleep. So depressing. My guess is that the only way to counter this is to win the PR war. For that is what this is, in my view. The truth has become irrelevant. Most of the world take, without question, what they hear in the mainstream media as gospel. Only by accessing that powerful influencer of the masses will we be able to fight back.

Illness and Politics

My last update delved into politics. It was a move away from my usual blogging topics.

This update is asking for less politics. Especially in relation to the millions of us who are ill and caught up in political storms.

I am utterly pissed off with the politics and sniping that accompanies my illness. Yesterday, the Medical Research Council (an independent UK body that decides which research proposals will receive Government funding) made the almost unheard of decision to ring-fence £1.5m for the biomedical research priorities that the working party had identified. Note - biomedical... not Cognitive Behavioural Therapy or Graded Exercise Therapy!

The announcement was met with, on the most part, scorn by the 'community'. £1.5m isn't nearly enough - this is an empty token gesture - blah blah. Now, I know the sum involved isn't huge. But for fuck sake people, it's an almost unique scenario. Never before have I heard of the MRC giving such special treatment to specific research proposals. Change has to start somewhere and isn't always massive initially.

Then we have the two camps still bickering about whether XMRV is THE key or whether it's a load of bunkum and the fight should all be about separating M.E. from CFS. For ordinary idiots like me, I read one side of the argument and decide it makes sense. Then I read the opposing side and change my mind.

I'm ill. All I can know for sure is that I'm ill. I want to be made better. I want to be cured. In the absence of that, I want to exist in as positive an environment as possible and to provide support free from politics for others who are ill.

Why couldn't I have got a disease that wasn't so bloody political?

A Little Bit of Politics

Time for another confession. Politically, I used to be a very silly little boy. I used to delight in being contrary and reveled in shocking those around me with my right-wing solutions to all the problems of the world such as everyone having to be euthanised at 60 to create room for younger generations and bombs being dropped on the worst housing estates to wipe out poverty the easy way. I say none of this with pride. If I were faced with such an idiot today I would pity and detest him.

Probably for much the same reasons that I supported a Catholic football team when amongst a family of Masonic Protestants, I became a 'fan' of right-wing politics. I was one of the few Young Conservatives in Scotland. I saw every problem as being solvable by the free-market and by the eradication of the weak links. What a prize fool I was.

Although I'm still guilty of many foolish moments in my life, I have thankfully grown up politically. Like many others in the UK, I was intrigued by the rise of Nick Clegg and the new life that suddenly seemed to encompass the Liberals. I was so fed up of being told how to live and think by New Labour that I was looking forward to seeing what the Coalition did. I saw a future of potential freedoms that had been so eroded under the Nanny State of the late 90s and the early part of this Century.

Now I look around me in horror as savage axes are wielded in every direction. I have to acknowledge that I look at it from a new personal vantage-point as I am not currently in a position to study or earn a living. I am vulnerable. I am needy. I am dependent.

This really is not what Liberal voters signed up for. At least I hope not. What we are witnessing has long-term consequences that should make us all, whether we are currently wealthy or poor, healthy or ill, a political Blue or Red, think long and hard about where we are headed.

We must consider what sort of society we want to create and maintain. How should we treat those who suffer misfortune through ill-health, poverty or bad luck?

The targeting of the needy rather than the greedy has dire implications for what society will become. Will we return to a 'me, me, me' culture? Some might say we've never left it but everything is relative. Labour, for their many faults, tried to preserve a safety net for those who needed it.

Watching current events in Tunisia saddens me for many reasons. It is a country I have visited as a tourist and is a place full of diverse culture and history. It saddens me that so much suffering is necessary to claim basic human rights and to preserve a revolution. Mostly though, I think of how much of a dream democracy is for many of these countries. Is democracy the panacea some see it as? We live in a supposedly democratic society here in the UK. Is it serving us well? Is the will of the people being acted upon?

A debate for another time though. For now, I simply hope we are aware of what we are headed towards and are prepared for the aftermath. How David Cameron thinks he can fix 'Broken Britain' by fracturing it into even smaller pieces is a mystery to me.