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.

The Power of Being Heard

Here in the UK, our expectations of treatment for ME/CFS are somewhat lower than some other countries. We are still routinely offered Cognitive Behavioural Therapy and/or Graded Exercise Therapy with little attention paid to physical symptoms. This, of course, angers me and the more I hear of the injustices served out to fellow sufferers the more angry I get.

Today I reflected on that sense of anger almost making me give up. I keep very up to date with all the advocacy groups and, whilst I'd never recommend burying your head in the sand and ignoring all that is wrong out there, I do wonder whether I need to spend a little less time focusing on what is wrong and more time focusing on what can be turned into positives. This update will address two areas linked to the theme.

Firstly, I visited my GP today (primary care physician, I guess they'd be called in other countries). I had, after being referred to the 'ME/CFS Centre' and not finding much of value there, almost given up on the medical fraternity and decided it was pointless dragging my exhausted body to appointments with doctors if nothing was going to be treated. However, I decided to give my GP one more try as I knew he was a guy who generally listened and took my opinions onboard.

So, I spent a large part of this week nervously preparing. I had booked a double appointment so that, in theory, I would have 30 minutes of his time. I had also booked a nurse appointment for straight after, in the optimistic hope I might get some blood tests authorised. I identified various tests that I felt should be carried out to exclude underlying infections (from parasites, bacteria or viruses) and meticulously prepared mini-speeches on why he should accept my requests.

I began by asking him to honestly share his views on ME/CFS and on what he was doing with other patients who had the illness. He was very honest about finding treating the illness frustrating (he's a man and a doctor - he likes to fix things!) and that he believes it is a physical disability of unknown origin. The poor guy must have felt like he was speed-dating me whilst I weighed up his pros and cons. I explained that I was frustrated with the diagnosis having the implications of me being beyond treatment and simply being left to manage as best I can. I then began what I thought were going to be fraught negotiations on which tests I could have. I fully expected to be told that I had received all the standard blood work and that nothing else would be done.

To my surprise, he agreed to every test I asked for! In fact, he added one I hadn't thought of. He also said he wished his medical student had been present as I was an "expert patient" who could pass on valuable learning. Whether this was empty flattery or not, I don't know, but it sure hit the spot!

Regardless of whether or not the tests throw up anything we can treat, I left feeling validated. I was heard and I was respected. Sometimes the positive outcome doesn't have to be that what is wrong is fixed. Sometimes it can be that we are simply listened to. He has said he is open to exploring different treatment options with me as long as I can back up my requests with meaningful research papers/data. This is potentially massive when considering how far behind the U.S. the U.K. currently is. There is much I can explore now, with the faith that the wisdom of people such as Dr Lapp, Dr Cheney or Dr Klimas might influence my own doctor.

So, I gave some blood for tests and I have to go back to give more (a lot more!) soon. A very productive day!

This also links in with the aims I had when setting up M.E. Community Projects. What I hope to achieve isn't based upon righting all the wrongs out there. It isn't based on anger or cynicism or negativity. It is solely focused upon those little, tangible ways of making a difference and helping others to feel supported, heard and validated.

Things are moving well in this area. I have been lucky enough to convince two very talented people to take overall responsibility for the editorial and design elements and we have already begun scoping out the first resource we will develop. If you want to get involved in some way (be it research, opinions, writing or supporting the cause in some other way) I'd love to hear from you.

The email address is: me_community_projects@live.co.uk

Here's to more of us being heard and supported :)

ME/CFS Community Projects - Group Now Active!

For those I cannot reach via Facebook, please be advised that I have set up the group where all ideas and plans etc will be stored. Please do join up here, even if you think you might not be able to contribute much:

CLICK HERE

Thanks so much in advance for whatever help you can provide!

Time to Begin

One aspect of chronic illness that I've already touched upon is a readjustment of lifestyle that, unavoidably, leads to a readjustment in friendships. I'm no longer a part of the same circles as most of my life is now spent indoors and in bed. As is often said though, one door closes and another opens. A change that I wouldn't swap for the world is that I have formed friendships with some beautiful souls that I have come to cherish.

Due to accident or design, a great number of these new friends are Australian and a large proportion are from Brisbane. I am sure I do not need to clarify why that is significant this week. Although I am far away, geographically, from the tragedies unfolding on the other side of the world from me, I am very much closer in spirit. Much of the past couple of days has been filled with worrying about friends who are caught up in the flooding and feeling helpless.

This in turn has led me reflect on what I CAN do. Hopefully those Brisbane residents who count me as a friend feel I am providing something of use with my solidarity and concern and my donations will help the massive clean-up efforts that await the dissipation of the flood waters. But I eventually realised that there is plenty of practical value I can be doing. Not just for the Australians but for anyone who is facing a future with M.E. and is struggling to find quality information or genuine support. Yes, time to roll up the sleeves and get back to work on the project I've been talking about lately.

I've dealt with the negativity already so I won't go back to that again. Let me just say though that I totally understand not everyone will find the end result of this project something they need or want to access. That's fine. Really.

I'm opening up a 2-week 'ideas' stage from now. For those of you who are part of my Facebook circle, I will be in touch there. For those of you who aren't, it'd be really useful if I was able to include you in the updates and if you could email your thoughts on what should be included in any information produced. Think back to the early days of your illness. What do you wish you had known? What did you need that wasn't easy to find? What do you value most about the resources you currently have (practical or people-related).

The email address to use is: ME_Community_Projects@Live.co.uk

A Short Break

I've decided to take a week or two away from my previous activities. This means no blogging, no Facebooking, no developing the Heart Rate Monitor forum and no working on my previously explained 'dream'. All of these are only on hold temporarily though.

I think this break will do me good on a few levels but it's mainly in response to how my previous ideas have been received within the 'community'. I have been surprised, and dismayed, by how hostile and negative some of the private communications received have been.

I appreciate what I have set out is my vision and I don't expect others to readily buy into it. I appreciate some might think it is pointless. I also expect to do the biggest portion of the work myself. I am fine with that.

I understand that this community is made up of people who are sick and might be struggling just to keep their heads above water and that they cannot devote the time or brain power to helping out. I am fine with that too.

What I am feeling angry about is how some have taken what I consider to be a selfless act and railed against it so. It makes me question the motivations of some who are active within this community of ME/CFS patients. I am saddened that the practical attempts to provide support and information, to those who might otherwise struggle to look after themselves in the absence of medical support, has been tainted by the politics attached to this illness and the bitterness of a few individuals. I must process that and it's best done away from being so active online. I don't intend to stay angry or stay away - I just need to regain my balance so that I can continue to move forward with what I still consider a worthwhile project.

To those out there who have been helpful in providing me with constructive feedback and kind offers of help, I thank you a million times over. It is only through pure-hearted and positive action that progress is made and I look forward to working with you all in the very near future.

I Have A Dream....Part Two

Further to my previous post HERE - I want to thank everyone for comments and messages of support left on this blog, within Facebook or via email.

I appreciated when I wrote the original post that my ambitions were grand and that it may well seem overwhelming or impossible. Further reflection, along with your comments, have provided me with more clarity about how this can all grow from such a humble beginning. I think it is important to break down that growth into smaller, more tangible, steps though. So, let's begin!

Lee Lee added some very pertinent comments in the original blog post and I think it makes sense to start with a specific and narrower focus in mind. As the Heart Rate Monitor group is already alive and well in Facebook HERE and in its own dedicated messageboard HERE, it seems logical to build upon this.

The aim, initially, will be to produce a user-friendly guide to activity management for those diagnosed with ME/CFS. This will incorporate the usage of a heart rate monitor but will extend far beyond. Although I continue to recommend the use of a heart rate monitor, I recognise that not everyone can or will use one. I also recognise that those using heart rate monitors need much more information than is currently provided.

Producing such a guide is still a challenge and I still need much help in making it a reality. It is, most definitely, achievable though and it is something that can be of real benefit to the community.

What next then? Well, the first step is to pledge your support by emailing:

ME_Community_Projects@Live.co.uk

Even if you doubt your own capacity to help out, I am sure each of you can contribute in some way. Please do therefore go ahead and email the group to be kept up to date with the plan for the project and how you can get involved. Once I have an idea of how much support exists amongst you all, I can start working on what needs to be done. Let me be clear though - this WILL happen. The less support I garner, the more time and effort it will take me but it will happen.

I end with a plea. Join this movement. Not for me - I am merely acting as a co-ordinator and catalyst - but for the good of those whose suffering we can identify with only too well. Spread this post far and wide and ask others to join this movement too. The activity management guidelines are only the beginning but we must begin somewhere. So, let's begin.