10 Reasons Why ME is Real

For anyone who didn’t hear about the Mr Liddle’s ‘delightful’ article in the Sun, here is a link to a copy of it.

 

For those who don’t want to read it I shall summarise. Essentially he says that people with ME/Fibro are not genuinely ill and are only pretending to be ill because it allows them to get benefits and other ‘perks’ of being disabled. Apparently 80% of people on sickness benefits could be working (no idea where he got this statistic). And people with ME/fibro are taking away benefits from people who are really disabled. 

As you might imagine I am very angry and a complaint has gone to the Press Complaints Commission and a brief letter of complaint to the Sun. 

In response to this article – 10 reasons why ME sufferers aren’t faking it. 

1)  The World Health Organisation categorises ME in the ICD-10 as a neurological condition affecting the brain. As far as I am aware the WHO doesn’t generally bother categorising imaginary conditions.

2) The NHS Choices site has a page for CFS/ME where they give information about the condition. The NHS has better things to do than create information pages about ‘pretend’ illnesses.

3)  The National institute for clinical excellence (NICE) have guidelines on how to treat ME.

4)   There are at least 250,000 people  in the UK with ME. Are we all under a mass delusion?

5)  Many people with ME can’t get state benefits because it is a variable condition. In fact   despite the fact that I undoubtedly qualified for disability living allowance (In the opinion of the Citizens Advice Bureau) I wasn’t given it. We gave up fighting in the end because it took too much time and energy.

6)    I get no benefits other than NI credits and we had to fight for those. What do I gain financially by having ME? – Nothing! And I am not alone.

7)   I don’t qualify for a Blue badge or any other ’perks’ because I don’t receive disability living allowance (see 6).

8)   I have lost a job, a career and my independence, as have many other sufferers. Why would we voluntarily do this?

9)   I rely entirely on my husband to support me financially and if I wasn’t married I would have to rely on my parents. If they wouldn’t support me (which they would) I do not know what I would do. But other sufferers do not have the support of friends and family and are in very difficult situations financially. Why would people who had a good income (including myself) suddenly decide not to work? - We didn’t, we had no choice. 

10)The symptoms of ME are complex - If you are going to fake a medical condition in order to get benefits, there are far easier ones to fake... back pain maybe?

A Little Outing

One of the difficult things about having CFS/ME is that going out can be rather a challenge. I’ve managed to cope with going out for meals, but I haven’t been to the cinema since before I was ill. The idea of going to the cinema fills me with horror. It encompasses two of the biggest factors for tiring me out: Lots of people and noise. I’ve wanted to find some way to ‘test’ how I would cope with a cinema outing for some time. 

Towards the end of last year I came across Barnsley House, a small hotel in the Cotswolds, and whilst browsing their website I came across their ‘cinema evenings’. The hotel has a small cinema and you can go and watch a film followed by supper, or have afternoon tea before watching the film. The cinema has sofas in it and is relatively small. I thought this would be an excellent way to test how I might cope with going to the cinema, and this seemed a good intermediate step.

So I made a booking for my husband and I to go and see Harry Potter and the Deathly Hallows part two. And we went on Sunday. Well, I have to say the whole thing was a complete success. We were a little late, but we plumped ourselves down on the extremely comfy sofas and were provided with drinks and cones of popcorn. It was larger than I was expecting, but I think it seated about 30 people. The sound was a little quieter than it normally is a cinema, for which I was very grateful as I find cinemas too loud at the best of times. We enjoyed the film very much, and my only complaint is that the room was a little chilly for me.

Afterwards we went to the restaurant and had an excellent meal. The cinema club offer covered two courses, but we opted to have the extra third course and a glass of wine as well and pay the balance. The whole thing works out as a very good deal and Barnsley House is absolutely lovely. Even in the dark the grounds and buildings look beautiful, inside was stylish and comfy and the staff were attentive and helpful. Hopefully we will be back to visit again, sometime in the not too distant future. 

I got home only a little tired after our outing and it has given me the courage to try going to the cinema in town. I still expect a cinema trip to be a lot more exhausting than our lovely evening, but I am now confident that I could cope with it reasonably well.

Hope for the Future

So, what causes CFS/ME? Well, the short answer is no-one really knows. It often starts following a viral infection. It can also be caused by stressful or traumatic events, some vaccines and certain chemicals, in particular: organophosphates. For me it started following a viral illness, and this certainly seems to be the most common cause.

There has been quite a lot of research over the years to try and find an explanation for CFS/ME, but until recently very little has been discovered. There was great excitement when a study in 2009 found fragments of a particular virus (XMRV) in the majority of patients with CFS/ME that they tested. However, it has since been found that this study used samples that were contaminated with this virus and the findings of the study have been retracted. No other research group has managed to find any link between CFS/ME and this or similar viruses. 

More recently a study using the anti cancer drug: Rituximab has had very encouraging results. Of the 15 CFS/ME patients involved, 10 found that their symptoms improved after the drug being administered. Now this is very interesting as Rituximab is normally used to treat a form of cancer know as Lymphoma. Lymphoma effects the lymphatic system which involves lymphocytes (a type of white blood cell),  and are part of the immune system. To be specific Rituximab targets  B-lymphocytes and destroys them. Now I am not saying CFS/ME is a form of cancer. But the fact that destroying the B-lymphocytes with Rituximab helped reduce CFS/ME symptoms indicates that maybe the B-lymphocytes have something to do with causing CFS/ME. 

Rituximab is also licensed to treat Rheumatoid Arthritis, which is an auto-immune disease (the body attacks itself)) and it has been used experimentally in several other auto-immune conditions. It is possible then, that CFS/ME may be an auto-immune disease. I say this with hope rather than conviction, because it would be nice to have a treatment for CFS/ME and a cause for it. However, it is very early days. One study involving 15 patients is very small, and much more research is needed to find out whether these initial findings are valid.

Midwinter Melancholy

At this time of the year I struggle to remain positive. Not particularly due my CFS/ME, although it does seem worse in the winter, but because I have Seasonal Affective Disorder (SAD). I was hoping to stick to specifically CFS/ME related topics for my first few posts, but this is the time of the year where I struggle most with SAD, and so I’m going to make a deviation. In a later post I hope to talk about depression in more detail as it is a big issue for people with CFS/ME or any chronic medical condition.

Depression is a horrible and insidious condition, and to suffer symptoms of it every year is very difficult. I’m rather lucky in that I have my symptoms mostly controlled by using a lightbox. This is a device that shines bright light at the eyes to compensate for the lack of sunlight we experience in the winter. For many SAD sufferers it is an effective treatment, and this is certainly the case for me. However, it can’t magic away all my symptoms and January, ironically, is the worst month of the year for me (I was born in January). I really struggle at this point, we’re past all the busyness and activity of Christmas, but spring is still some way off, and the days are still short and it gets dark early. It is grey and cold and it rains a lot. A few bright days can work wonders for me, but we’ve been short of those recently. 

 

If I start using my lightbox in September before the clocks change, I manage quite well until mid December. At this point I begin to be aware of a dragging sensation at the back of my mind; I want to stay in bed (even more than usual). But I carry on quite well, because in mid December I’m busy and I can keep that feeling at the back of mind. When I get to January it is quiet and there is nothing to keep me busy. Especially now that I don’t have a job or studying to do. The dragging feeling becomes more insistent and a dark cloud begins to spread out from the back of my mind, surrounding it and trapping me inside. I feel my emotions begin to be softly blunted, less real. A strange emptiness fills my mind and I begin to feel trapped. 

I am more easily upset, little things that normally wouldn’t bother me, seem to hit a tender spot, and leave me saddened and tired. I become aware of ‘holding myself together’, rather than existing as a comfortable whole being.

I have struggled particularly in the winter since I’ve had CFS/ME. The issues that arise from it play more on my mind at this time of the year. And the symptoms of SAD add to the CFS/ME symptoms. Fatigue and needing to sleep are symptoms of both, and added together they can be quite disabling. Early in the autumn I start to crave carbohydrate and fat and develop an obsession with all things chocolate. But at this time of the year my appetite begins to wane. It becomes much harder to see things in a positive light. I also become tense and anxious for no particular reason. 

In March things will begin to improve. And the emergence of any sign of spring lifts my heart a little. In fact, amazingly, I saw some daffodils pushing green shoots out of the ground yesterday. I look forward to more and more signs of spring and the feeling that soon winter will be a long way off again, on the far side of summer. 

I have noticed that using my lightbox relieves some of my CFS/ME symptoms in the first few months of using it each year. Why this should be I have no idea, but at the time it’s very helpful, it’s a shame it doesn’t seem to do it all winter.

It is thought that a lot of people have undiagnosed SAD, so if any of this sounds familiar to you, or sounds like someone you know, please look at the SAD Association’s website. Here you can find further information about SAD. The NHS also has some useful information here. If you are interested in purchasing or trialling using a lightbox I can recommend Lumie, who I have bought several lightboxes and other products from over the years. 

‘Perhaps I am a bear, or some hibernating animal underneath, for the instinct to be half asleep all winter is so strong in me.’ - Anne Morrow Lindbergh

An Introduction... and dealing with Frustration

It’s now two years since I first developed Chronic Fatigue Syndrome (CFS) or as it is more often known ME (Myalgic Encephalomyelitis). And I can honestly say it has been the most frustrating thing that has ever happened to me.

Back in the summer of 2009, I was happy and content. I’d just got my degree in Pharmacy and achieved the marks I wanted. It’s hard to believe that happy confident young woman was me, she feels like a different person.  I took my health for granted, I had no idea that it was about to be snatched away from me. That summer I started my final year of training in a local hospital and I loved it. It was hard work as I had to study as well as working full time, but it was very rewarding, and I was happy. 

 

Then, in late December 2009 I went down with ‘flu and I never recovered. Or at least that is how it seems to me. It is as if I got stuck in that phase when you’ve got over the illness but you haven’t yet gone back to normal. The point where you are weak and tired and debilitated, but not actually ill. This is far from a scientific definition, more my own personal one, but many people with CFS/ME will know what I mean.

Two years later and somewhat improved from those early days of illness, I’m looking back and thinking about all that I have learnt and been through in the last two years. This brings me back to my original point – frustration.      

I was a very independent young woman. I was happy to go out and about on my own, and one day I could no longer do that. I was stuck at home, unable to leave the house and barely able to look after myself. I relied on my husband heavily and that frustrated me. I was no longer able to cook, something I missed terribly. I could just about wash and dress myself most days. The loss of my independence was a huge shock, and the frustration of not being able to do what I wanted was very hard. It was as if I had suddenly turned into an old, frail woman, almost overnight. And I had skipped from 27 to 90 without living the years in between. I could never have comprehended it if it hadn’t happened to me and I was angry and frustrated at losing my youth and energy. My career was slipping away from me, my body had given up almost entirely, and it was an effort to stir from the sofa or my bed. Almost worse than the frustration, I was too tired to even be bored. Normally sitting at home with nothing to do would have driven me mad with boredom. But now even watching the TV was exhausting. As the months passed I made slow progress, each tiny improvement took weeks, and the frustration at my slow improvement ate at me. And through it all I knew I wasn’t going to be able to sit my professional exams in the summer and qualify as a pharmacist. I was helpless; I had lost control of my life.

Ultimately, I think it was the loss of control that made me so frustrated. But with a bit of help and advice I began to take back a little control wherever I could.  I began to make short lists of things to do. Initially I’d list three or four things to try and do in a given week. And to begin with they were very small things, things that were barely things to be done at all. Things like – walk to the end of the road (100yards at most), put one load of washing in the machine, make an appointment to see the doctor, put new batteries in the TV remote.  And those would be my aims for the week. It seems ludicrous, but the satisfaction of ticking off those little tasks was enormous. I felt more useful and less useless, and importantly less helpless and frustrated. With time they became more significant tasks and the lists became daily lists with more and more things on them.

Although this was very helpful, I still struggled with feelings of frustration and helplessness. Then one day I had a revelation. I had to stop comparing how I was now with how I was before I had CFS, because I would inevitably fall far short of how I used to be. Such comparisons were bound to be negative, and make me unhappy. So I stopped comparing my CFS self with my old self and instead made all comparisons relate to my worst point of my CFS. Thereby making all comparisons positive instead of negative. This alleviated my frustration a lot and allowed me to see I was improving, rather than always seeing that I was worse than I used to be. It was a big step forward.

I’m not going to pretend I don’t still feel frustration, I do, regularly. But it gets me down less, and the degree of frustration is smaller. I have no doubt that this is in part due to feeling quite a lot better than I did two years ago. But I think adjusting my thinking has helped me a lot as well.

‘It is hardly possible to build anything if frustration, bitterness and a mood of helplessness prevail.’ - Lech Walesa