An amazing story!

Please read Sarah-Louise's story. You are welcome to re-post her story on your own Facebook, tweet the link to my blog, whatever; let's raise awareness of how severe M.E. can be.

If you would be so generous as to sponsor her too, you will find the link after her story. She's one of the most amazing people I know, so sponsoring her means a lot to me.

There is so much I want to say! Before I became ill I hadn't even heard of M.E and the first twelve years of my life were magical and very english. Then I had a vaccination against meningitis c and my health very quickly began to fall apart. At first it was just all kinds of aches and pains, dizziness, forgetfulness, nausea, the occasional fainting spell and a lot more tiredness but within two years I had a constant migraine and I struggled to drag my legs around because they were so heavy.

Soon I couldnt walk at all and I began to 'freefall' until I was blind and had no memories. I lost all of my words and my ability to understand other people speaking. I was so exhausted even when I woke first thing that it felt like I was trying to lift buildings to try and move.

I was housebound for a year and by the end of it I could stand for 30 seconds and manage a few painful steps, but then I relapsed again and became bedbound. I didnt sit up for four months, I barely moved and I couldnt talk. I had no sense of touch and no strength in my body. I suddenly perked up in April 2004 and could sit up and read a little, I was so excited. In July 2004 I woke up to find my whole body 'on fire'. So hot it felt like I was melting, so painful I wanted to scream and scream and scream. I honestly didnt think I could bear it for one minute. So far I have been on fire for eight and a half years and counting....

At first the pain, the heat and the pressure-which made my head feel like it was gripped in a vice- was so intense that I couldnt move or speak again. For six and a half years I was silent and still, simply enduring, my hearing was so sensitive that I had to wear headphones all the time. My parenst added another door to my room and triple glazed the window. every noise was still excruciating. I had blackout blinds because the light made me physically sick. I released a strange chemical that smelt acidic and clung in clumps to my hair, pooling in white/brown patches on my skin.

I woke one day to find my hands curled in fists, rigid, paralysed and I couldnt open them.

Nothing seemed to change until 2010 when they opened enough for me to be able to use my 'claws' and I began to be able to do little things despite the fire. like read and write and go online.

I am still bedbound, although I had a little time when I could move around the house last year, and the fire has been particularly awful again this last year.

Im 25 years old and I so want to live. I could write booksworth on everything thats happened, but really all I need to say is, Invest in M.E are actually doing something to help people like me...and their are hundreds of thousands of us. We all fight the same dragon, we all want to beat it so we can be free.

And I cant even tell you how heroic my M.E friends are, what they go through and also how kind they are to other people! If you dont know them, you are missing out!

With them and the girls from my old schools, and other people Ive met along the way, I feel that I have a life rich in people. But I am a young, free spirit trapped in a body that will not work! Invest in m.e want to change that.

And as to losing the 50 lb, its something I really need to do, although I do not know who is going to keep mr.kipling in business without my help ;)

Click here for Sarah-Louise's Just Giving Page

Amazing isn't it. Can you imagine being totally bedbound, unable to move, you can't cope with light, or sound, and your body is burning from head to toe - for years? 

I can't. I have M.E.. I've experienced what Sarah-Louise describes, but for me it was only a few months. I simply cannot comprehend enduring it for what must have seemed to be endless.

Sarah-Louise has suffered more than anyone should in one life time, yet all she wants to do is give! She's one of the most encouraging people I know. She's that little light blinking away at the end of the tunnel. So, please .. help her raise the money for IiME. It will make her so happy.

Max Pemberton to champion our cause?

Max Pemberton has written a second article about M.E.. 

Why few dare tackle the psychology of ME

From some of the comments readers have left, I think I am rather glad that I missed his original article. He describes how he received torrents of hate mail following his original article. But since he starts this article by making the extremely uneducated statement that because XMRV and pMLV have been ruled out as causing M.E. that there is no biological agent, he is obviously inviting such hate mail again.

Funnily, reading the comments readers have left, he hasn't actually received the hate mail that he seems to be seeking. I've not seen one single comment supporting either him or his article, no M.E. haters, just a lot of people explaining to him how uneducated he is and providing some fabulous information on M.E.. The comments are not moderated; my own comment appeared on the site the second I posted it, so it isn't as if any M.E. hate is being hidden. I'm quite impressed by this.

He is a supporter of the 'M.E. is psychological' argument. His evidence seems to be the hate mail both he and Dr Wessely received. It seems to be a pattern of such thinkers that they completely ignore all the studies showing physiological evidence that M.E. is a neurological condition.

He is right in that people with M.E. are scared of M.E. being pegged as a psychological illness. He seems to think that this is because of the stigmatism psychological illnesses have though, when in fact it is because we can feel that it is physical. This just goes to show his own thinking on psychological illnesses, and that he's arrogant enough to presume that over 250,000 people think the same way that he does. Personally, I have absolutely no problem with admitting I have psychological problems. I've had severe depression and a breakdown in the past, am coming out of a depression again now. I have anxiety and PTSD, elements of OCD. It's no problem for me to say this. I do have a problem saying that M.E. is psychological though. I do not believe it is. I can feel the difference.

Doctor Shephard is the perfect example of a convert. He was a believer that M.E. was psychological, until he became ill with it. He has described the transformation to his life and his thinking in various places online.

Max does actually point out further into his article that the hate mail he received was perpetrated by only about 200 people, many of whom didn't even seem to be in the UK. I believe he placed this far into the article on purpose, as people who just read the first couple of paragraphs will miss it; their overall impression will be that all biological agents have been eliminated as possible causes of M.E.. He doesn't explain that there are over 250,000 M.E. sufferers, 200 is a minuscule portion of these. He's used the behaviour of these 200 people as evidence that we are all mentally ill. This is not particularly rational behaviour in itself.

I find it amusing that at the end of the article he says he "has a deep sympathy for sufferers of M.E.", that he'd "happily champion their cause" but that because of his experience he doesn't wish to be involved. (So, no, he wouldn't happily champion the cause). After writing one hateful article on M.E., and this one smiting many M.E. sufferers, it seems strangely ironic that he would make this hollow offer. It would be amusing for someone of his vein of thinking to champion the cause of M.E. though. Assuming such a role would mean working with M.E. sufferers, meeting with people regularly, seeing what we live with and go through on a daily basis. I don't think it would be long before he changed his mind about it being psychological.

ME / CFS Research Newcastle

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

ME / CFS Research Newcastle

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.

Happiness Barometer by Debbie Deboo

Debbie's a friend of mine. She posted a link to one of her blog posts on Facebook today, so I snuck over and had a snoop. Let me share it with you:

I found some old photographs the other day, pre illness. In some of them I’m sitting in a festival field with purple hair and a paper cup of beer in my hand surrounded by crowds. I have a big smile on my face. I post them onto Facebook and someone remarks ‘you look so happy’.

That got me thinking, yes of course I am unhappy with my illness but I hadn’t really realised the extent of how much it showed in my face and how my eyes now didn’t sparkle and my smiles were much more muted. I don’t set out to look unhappy and in fact I don’t go around feeling miserable, I think I’ve just fogotten what it is like to be SO happy. To be with friends, enjoying myself with beer and music, which of course never happens anymore.

It got me thinking about Richard and how his happiness must have been affected, he was sitting in that festival field too, smiling. He doesn’t go to festival anymore, and he isn’t ill. he stays with me….

I guess our barometer of feelings is based on a sliding scale and that sliding scale adjusts…..

I don’t feel particularly unhappy but maybe I’ve forgotten what happiness feels like.

It had me in tears. I had such a similar experience recently. I scanned all of my old photographs a couple of years ago. Then last year uploaded some to Facebook. The husband of a friend of mine was obviously looking through them. I've known him about a year, met him properly just the once. He sent me a private message saying simply 'What happened to you?'. Asking what he meant he asked me why I used to look so full of life, even despite being depressed, but in my more recent photos and when he met me that spark is gone.

That's M.E.. Unfortunately that's what it does to us. 'What happened to you?' is a question that will remain with me for some time to come.

Frustrations: The mother of an M.E. sufferer

When I invited people to share their frustrations about M.E. with me, one of my friends came forward to tell me that her son has M.E.. I hadn't previously known this. This is what she had to say...

ME can be inherited........! that awful realisation that you’ve passed something awful on to your child!

I’ve never actually been diagnosed with ME – I’ve suffered with most of the symptoms though since I was 19. My own doctor doesn’t like labels – and after being diagnosed (by another doctor) with Fibromyalgia ten years ago (at 34), the need to have it confirmed lessened. Friends with ME tell me I have it, and I have to say I think I probably do too, but a lot of the meds they use are the same, and the extreme exhaustion of both is very similar – so it matters less to have the ME label.

I know there’s nothing I could do to stop it, but knowing that my son (then 16 and just finishing his exams) had contracted the horrible illness that blighted my adult life and that he got it because I’d had it was very hard to deal with. Interestingly (!), his father has Fibromyalgia too..... so my poor son had no chance to avoid this pain – a lot of people suffer with both ME and Fibromyalgia.

My son is now 21, he’s been through college, a year of Uni and even parenthood whilst suffering with this horrid illness. College and Uni were hard – but they knew about his illness and gave him extra time to complete things – I had to help a lot too, especially with the written work; so most of his coursework was a joint venture – we joke that I too have a Diploma in Modern Music (or at least, the written part – I can’t play a single musical instrument!). Parenthood – well, that’s exhausting at the best of times – adding ME into the mix just adds a whole new dimension – we all help when we can.

The practical side of the illness (or at least the support of it) is straight forward – you know his energy has its limits and don’t expect too much. You do what you can to help, you make allowances and adjust.

Emotionally though it’s harder – maybe because I can truly empathise – but trying to keep him going when I’m struggling to keep my own ‘emotional’ head above water is so draining. There are certainly days when I will do everything to keep him going at a cost to my own health – not because he asks it, but because I’m his mum and that’s my job (ok, silly maybe, but it’s how I feel).

He doesn’t like people knowing he has ME – in fact it’s only his really close friends that do know. He feels that somehow he’s failed by having the illness – that they will think less of him (they don’t, I can assure you). But as his mum, that’s really hard to deal with – I’m pleased, of course, that he doesn’t use it as an excuse – but sometimes I wish he wouldn’t be so hard on himself – and would allow people to care and make allowances.

He’s my son – and I would do anything to take this terrible illness away – but we have to live with it, him and I – we don’t have a choice, do we?

Frustrations; how long have you got?

When I asked one of my friends with M.E. what her frustrations were, this was her response:

"Have you got 3 weeks to read it lol? Its the most frustrating illness I've ever come across. You can't plan, you feel like you're living on luck, you're in pain every day, getting benefits to which you should be entitled to is luck of the draw, you fight to get better which makes you feel worse, you feel useless when you can't even make a meal or string a sentence together. If you have a 'good day' (which is a term I don't like as I am rarely symptom free) its frustrating to try and not be 'normal' as you know you'll pay for it over the next few days. You worry about what people think if they see you out doing something most others take for granted like shopping as to other people you look 'normal' and don't look ill. Its difficult for people to understand how you feel...and if one more person says "Oh, I get tired too..I just....blah blah blah...you should try that" I'll possibly use some of my precious energy in punching them...if the pain in my arms allow it!!!"