ME/CFS: Places you can find out about my condition

ME/CFS, the condition I have, is one of the things that I am not going to write about very much. This is because there are numerous places you can go to find out about it and also numerous people blogging about living with it. Although everyone is affected slightly differently, I do not think I can add much original material to the internet regarding ME specifically.

However, I know that there might be some people wondering what it is exactly that I have, so I will provide you here with a whole load of links that I have gathered over the last couple of years. You can pick and choose which ones you click on, depending on how much you want to know and how much time you have!

ME charities

The following are UK charities who fund support for people with ME, research into the condition or a combination of the two. Their websites give basic facts about ME, such as what the symptoms are and how many people are estimated to be affected. On their news pages you can find out about the latest research findings.

The ME Association
Action for ME
Invest in ME

YouTube

There are lots of videos on YouTube about ME/CFS. Most of them are depressing, a lot of them are just words with sad music. Although I can understand why people with ME want others to understand how truly awful it can be, I find it difficult to see how such videos can really change people's minds about the matter. Feel free to correct me if you have seen one of these and been moved by it.

However, is isn't all bad. The two links below are the best videos about ME that I have come across, although there may be others. They are each made by a teenager with the condition, and they provide an excellent explanation of the condition and surrounding issues that people with ME may experience.

ME Awareness by Poppy

Ways to describe and explain ME/CFS

There are also various films that people are trying to make about ME (including interviews with researchers etc), but a lot of them are relying on crowd sourcing the funds, so only trailers are available at the moment.

Again, I am somewhat skeptical of what this awareness-raising will actually achieve. But on the other hand, I do believe that more research and better recognition is desperately needed. ME affects more people than, for example, MS, yet more research has been done on MS and therefore more is known about it.

Voices from the Shadows is a UK film that was released in 2011. It focusses particularly on those with very severe ME, who are often bedbound (I do not fall into this category).

The Blue Ribbon is a film in production, currently looking for funds to enable completion. It is based in the US and should feature interviews with patients, family of patients and researchers.

Canary in a Coal Mine is a very new project based in the US. It has attracted a storm of attention online and looks very promising. The woman behind it has ME herself and is very well-read on the subject. She is interviewed here on the TED blog.

ME blogs

On the right are links to other blogs I read. There is a small list of blogs about ME, but it is worth noting that some of the  people in my other blog lists also have ME. It isn't the main focus of their blogs, but there are places where they mention it.

Danni in particular has written a great piece here. Although it is long, it sums up pretty much all the important things about ME, in a way that is pretty easy to understand.

If you would like a US perspective, this is a good place to start, and there are some other US ME blogs and websites linked from there on the right hand side of the page.

Current Issues

Currently there are 2 major issues causing uproar within the ME community.

In the US, the HHS have just signed a contract with the IOM to produce a new case definition for ME/CFS. The problem with this is that it is likely that experts in the condition will not be part of the process, it is costing a lot of money and in any case there is a definition that was published in a journal several years ago that the scientific community view as perfectly adequate (The Canadian Clinical Case Definition). This definition has not yet been adopted as diagnostic critieria by any country although it has been used many times for research purposes. The view of patients and many international experts is that the Canadian definition should be adopted by the US health authorities and the money instead spent on further research.

In the UK, the National Institute for Clinical Excellence, who produce guidelines for treatment of many diseases and conditions, recently announced that they would be placing certain conditions, including ME,
on a static list, not to be reviewed often. The view of patients and the MEA is that the current NICE guidelines fall short, and in the light of recent research (and the Canadian definition which NICE ignored first time round), desperately need updating. Originally, it was anticipated that the guideline would be updated this year.

In-depth Information

If you are really keen to know lots about ME, these links are to websites which provide more in-depth information about research and the politics surrounding the illness. They are both US-based but with an international emphasis.

Phoenix Rising

Cort Johnson

So there you have it. ME in not-quite-a-nutshell. Unfortunately being such a complex, misunderstood illness surrounded by ridiculous politics, it will not currently, if ever, fit in a nutshell.

Language and Disability

I want to write about the issue of language and disability mainly for my non-disabled readers, but I also want to explain the words I have chosen to use within future posts. There are a few different opinions about certain terms, and I think it is fine for each disabled person to use whatever words they feel comfortable with. I want to share my views here not just to educate non-disabled people but also to justify my choices to disabled readers who may or may not share my opinions.

Please be aware that I do not speak for all of the disabled community. If you are not sure which words a disabled person prefers, just ask them.

Many disabled people and all social workers (I hope!) will be familiar with the social model of disability. This article basically explains the social model and why some people prefer the term 'disabled person' rather than 'person with a disability'. If you aren't disabled, I strongly advise you read the article.

It is worth saying that some disabled people do not like either term. I once watched a documentary where a guy who used a wheelchair was designing a brand new type of wheelchair, and he said that when the army dispose of a bomb they disable it, then it ceases to function. He felt as though saying he was disabled was like being compared to something which ceases to function.

Generally speaking, in the UK we prefer 'disabled person' and in the US 'person with disabilities' is the preferred term. There are also differences between the US and UK about the term used to describe discrimination against disabled people. This blog post and this one explain about that.

I am intending to use the following terms:

Disabled person/people I have chosen this because I subscribe to the social model (despite it's limitations, which I will explore another time). I will not be offended if you describe me as a person with a disability, because I do not feel as strongly about the issue as others do. But I will always describe myself as a disabled person because that is how I identify.

Disablism The word used in the UK to describe discrimination against disabled people. I am using it for the same reasons as I use the word disabled. However I do disagree with the term ableism (mainly used in the US). I feel it is misleading and I was very confused by it when I first came across it.

Living with As in, I live with ME. Yes, sometimes I suffer with it, but I do not like to dwell on that and it is not the case the majority of the time. This term also has no emotional connotations, it is simply a statement of fact.

Experience/experiencing I experience symptoms such as headaches. Again I am going to use this term as it has no emotional connotations. My experience of symptoms is never a good one (unless I am experiencing fewer symptoms relative to, say, the number I was experiencing yesterday) but it isn't necessarily bad. Often it is indifferent, sometimes even funny (I tend to fall over quite a bit and sometimes muddle up words*)

Accessible/Disabled (facilities e.g. car parking space, toilet) I will probably use these words interchangeably, but I am trying to move towards using the term 'accessible' because it is becoming more widely used in the UK and has a positive connotation; I can go there because it is accessible.

Impairment(s) Again, this is to do with the social model. An impairment is what a disabled person has; a condition, illness, or something else. There is no emotion attached, and it is a good way of talking about these things without having to call it 'a disability', because some people don't feel comfortable with that.  It is also easier to explain your access needs using this term, rather than having to explain the confusing medical names of the condition(s) you have.

Because of my impairment, I need to do X this way, instead of that way.

My impairment means I need to use a wheelchair.

Wheelchair user/using a wheelchair I vastly prefer this term to 'wheelchair bound' or 'confined to a wheelchair'. This is because there are connotations of pity with those terms, and no-one, no matter how severe their mobility impairment, is glued into their wheelchair. Someone might need a harness or lap belt for their own safety, they might spend a lot of time in their wheelchair, but they almost certainly get out to go to bed at least, even if they use a hoist to do so. More people than you think can get out of their chair and walk a bit (I can), and even people who cannot walk at all might get out to sit on their sofa or a comfy chair.

I prefer the term 'reliant on a wheelchair' if someone cannot get around without one, or describing wheelchair use as 'full-time' /'part-time' or 'indoor'/'outdoor'. These are factual statements which describe how and where someone uses their wheelchair. I am a part-time wheelchair user and I use my wheelchair outdoors and in large indoor spaces such as shops.

Non-disabled I feel this is currently the best term we have for describing people who are not disabled. I don't like the term 'able-bodied' (although I sometimes use it because I am still training myself to use 'non-disabled') because it implies that disabled people can't do things because of problems with their body, and this is in direct conflict with the social model.

It also implies that non-disabled people do not have impairments. It is possible for someone to have an impairment, yet not be disabled. My husband has dyslexia, but it now has very little impact on his daily life and he does not face barriers to normal participation in society. I was the same before I had ME. I have mild dyspraxia, but I never considered myself disabled because of it.

Carer By this I mean an 'informal' carer such as a friend or family member, not a paid carer. This is a very difficult term. I have become aware since reading disability blogs that many disabled people are not comfortable with this term, however, no alternative has been thought up as yet (please correct me if I am wrong about this). I think many carers are ok with this term, certainly the main organisations which represent carers still use the term. However, I am very aware that my husband hates the word, although technically he would be considered to be my carer. As there is no alternative, I will be using this term, although sometimes I might put it in quote marks if I am finding that it doesn't feel comfortable in a particular context.

You will have noticed that I try to steer away from anything emotional in the terms I have chosen to use. This is because, when talking about my condition, the fact that I'm disabled or my access needs, I have no desire or need to invoke emotion in the person I am talking to. It is not that becoming disabled and being ill is not an emotional experience, far from it. But there is a time and a place for discussing such things, and I have no desire to discuss them with total strangers like shop assistants when all I need from them is to tell me where the lift is.

I think that pretty much sums it up for me. I might edit to add further terms as and when I use them. If you would like some further reading on the issue of language and disability, you can find some here,  here and here. You do not have to agree with everything you read, but I encourage you to read different perspectives to aid your understanding of various points of view.

EDIT: This is another different perspective to read and consider.

*Please note: not all disabled people will find it funny if they fall over or muddle up their words. For people with communication difficulties, the experience can be quite frustrating. Also, for some people falling over means they hurt themselves. This is clearly not a laughing matter. The best thing to do is to take the cue from the person. If they laugh, it is ok for you to laugh along with them.

Apologies

I know I said that I wouldn't be posting very often, but I didn't actually intend it to be this long, especially since I've only posted some introduction-type stuff.

So, apologies. I have excuses, like I was moving house, but really I need to stop reading other blogs and get on with my own! It has also been more difficult than I thought getting my jumbled thoughts into coherant posts.

I have a couple of posts lined up pretty much ready to go, so expect to hear more from me over the next week or so.

Becoming Chronically Ill/Disabled

When I returned to work after the Christmas break, in January 2011, I didn't feel right. I couldn't put my finger on it. I carried on as usual, thinking maybe I just had a few too many late nights at Christmas.

Two weeks in, I went to Southampton at the weekend to see friends. One of them was off to Venice for a student exchange. I noticed my glands were up and knew I was going down with something. By Monday, my tonsils were feeling inflamed too, so I phoned in sick and went to the doctor, in case it was tonsillitis. My GP said it didn't look bad enough to be a bacterial infection, and that it looked like a virus that was doing the rounds. She said to take a couple of days off and then I'd be fine.

But I wasn't. I was good and took the time off, but a week later I found myself back in her office once again with the familiar fatigue having started to set in. We tried some antibiotics. We tried different antibiotics. Eventually she tested my blood again. Low vitamin D. Supplements. Still nothing. Cancer scare. That revealed that I'd had glandular fever again. An explanation for the tonsil swelling, and prolonged fatigue.

But by this time I'd been off work several months. The fatigue hadn't gone away like it had before. Other symptoms were starting to creep in. My legs often felt like jelly. Then they started giving way. My glands hadn't settled down. I began to notice that how much I did affected my symptoms. They got worse if I did too much, but I couldn't get a handle on what was too much. I couldn't understand my lack of energy. I began to get frustrated. Any improvement was destroyed because I thought I was getting better and started doing things again. Still I didn't get it.

Slowly I began noticing headaches, concentration problems and minor memory lapses. Random aches and pains, a couple of dizzy spells. And still the relentless, severe fatigue and need for sleep.

I nearly attempted a return to work, but before arrangements could be made, I caught a cold. I'd had another virus the month before. Infection after infection ensued, each one making me progressively more debilitated. After I'd had a cold, I would get out of breath just climbing the stairs. This went on for weeks. When improvement came at last, it was only small, and then another infection came anyway.

I slowly began to realise I might not be going back to work. I slowly began to realise I couldn't walk very far and needed a wheelchair. I slowly began to realise how much help I needed with stuff. I slowly began to realise I was disabled.

I had a big relapse in October 2011. I went very pale, struggled to climb the stairs again, got exhausted standing in the shower. I had to rest a lot, especially in the mornings when I struggled to function. The glands in my neck and chest were swollen and painful. My brain didn't work properly. My legs didn't work properly. My arms ached from cooking an evening meal. Months before, I had already given up most of the household tasks to my now-husband.

At last, I gave in. I stopped fighting it. I agreed not to go back to work. I applied for Employment and Support Allowance. The pressure was off, I relaxed and rested. I finished planning our wedding via email and the internet.

In the spring of 2012, I improved a little. Tentatively at first, but then it was clear I was a bit better. My cheeks had colour, I could walk a little bit further and sometimes I didn't need to rest in the afternoon. It wasn't good enough to go back to work, but I thought maybe I was getting better.

I knew getting married and moving house would take it out of me. By August 2012 I was worse again, but stable, and not as bad as I had been before. I was confident I could improve again, and planned to do a proofreading course with a view to working from home.

But as the dust settled, it was clear I was still struggling. I was constantly frustrated at how little I could do in a day. My to-do list kept getting longer. In September I got a virus, and at the beginning of October a winter relapse took me once again.

Becoming a Social Worker

In 2002, or thereabouts, I decided I wanted to be a social worker. I'd always wanted to work with children, but also wanted to go to university, as I enjoyed learning. I did one of those silly computer quizzes they make you do at school, to find out what career you would be suited to. There were lots on my list, and social work was one of them. There was also a big advertising campaign going on at the time to try and encourage people into social work. The strapline was 'Social Work: It's about people. It's that simple, and that complicated.' I thought it sounded fascinating.

I did my A Levels and a gap year working as a care assistant with people with learning disabilities. I had to delay the start of my job because I was unwell. I had a fever for a couple of days and then just felt really tired all the time. I had blood tests done- nothing. I asked the doctor what was wrong with me. He replied, 'post-viral fatigue syndrome.' He advised me not to start my job till I felt better, and that might not be for a few weeks. I took his advice and when I felt better a couple of weeks later, I started.

I went into that job completely naïve and unprepared, but I left with burning passion to make a difference to the lives of people with learning disabilities. During the year I had 2 months off with glandular fever, but I recovered well.

I had an amazing time at university, (cliché alert) growing as a person and developing a sense of professional identity. I graduated with a 2:1 in July 2008. A week before my graduation I had been offered my ideal job as a social worker in a local authority learning disability team. It was the first job I was interviewed for and the only one I wanted. I accepted straightaway.

I travelled Europe with my now-husband during that summer. When we came back, I went down with a dizzy virus. I took to my bed, then felt better after a couple of days, so I decided to do some manic cleaning of our new house. The next day, I was so exhausted I could barely think. I alternately thought, 'Food' and 'sleep'. The fatigue stuck around for a few weeks. I had to delay starting this job too. I had more blood tests. Nothing. It went away and I started my job. I thought no more of it.

For the next two years, I was more or less fine. Work was stressful at times, and I feared constantly that I wasn't a very good social worker, despite everyone telling me I was. In 2010 I didn't plan my holidays very well, and ended up working a long stretch over the summer without much time off. I also had at least 2 stressful cases, one of which involved daily phone calls due to the precarious situation. The other included a day in court (which is rare when you work with adults).

I could feel myself getting run-down, and on the advice of a locum GP, took a course of multivitamins with ginkgo. It helped a bit, but I went down with a cold/fever in September anyway. I took 2 days off sick and went back to work. My colleagues told me I looked pale and I struggled through the day. I went to my GP the next day, and was told to take the rest of the week off. I ended up taking the rest of the month off.

I went back feeling a little tired still, but this soon improved and I felt full of energy. My now- mother-in-law said she'd never seen me looking so well. I threw myself into my work, beavering away to catch up on the piles of paperwork and get some cases closed. I did well, and finally felt like I was getting somewhere. I was beginning to claw back some confidence as I felt like I finally knew what I was doing. I was looking forward to taking on some new cases with fresh challenges.

I was feeling tired by Christmas but thought that was normal. I was going to have some time off, and ended up having a lovely Christmas.

Intro

I'm going to start blogging again. The main reason is because I have been having ideas, which didn't happen enough with my last blog, so I finished it. I am very much hoping that this blog will be better.

Since I started my last blog, a lot has changed in my life, and this year I am on a mission to make sense of the situation I find myself in. I have already started this process; it started from the moment things changed, but I would like to take some time to reflect on that in the hope that my experience may help others in a similar situation.

I also feel I have some things to say about disability and social work, and about how I felt about disability as an able-bodied person compared with how I feel now as a disabled person.

Finally I feel that it will help me communicate my feelings about my situation to other people. Reading other blogs has helped me to understand the writers' perspectives in a way which I wouldn't have through just talking to them. Reading the blogs of strangers helps me understand people that I might never get the chance to meet in real life, but whose perspective and opinions could still be useful in helping me better understand the world around me.

I hope that I can provide some useful food for thought for social workers and students. There will hopefully be a smattering of useful information and links too.

There are some things that I am deliberately not going to write about. It is not because I do not care about these things or don't have an opinion about them. It is just that there are plenty of other people who are saying it better than me. I will endeavour to point my readers in the direction of these people.

My first couple of posts have been pre-written and so will be published quickly. These will give a bit of background to me in terms of how I became a social worker and how I became ill. If you know me well, please feel free to skim or skip these posts, as you will probably know most of what I will be writing about.

These posts are not intended to be particularly in-depth and I hope that they do not come across as too emotional. The intention is purely to give context, and to have something to refer back to when I want to write about particular topics in more detail.

In the future, posts may not be as frequent because I have to write a bit at a time and cannot use the computer for long periods.

Also, please bear with me regarding layout, font etc. I have done my best so far but things may change as I get to grips with the technical side of blogging! Any suggestions regarding layout, accessibility and other technical things are welcome.

DISCLAIMER

The opinions in this blog are my personal opinions unless otherwise credited, referenced or linked.

I am not a social worker currently. It is a protected title and one has to be registered to use it. I was registered as a student from 2005-2008 and as a qualified social worker from 2008-2012.

Although I am not registered and cannot call myself a social worker now, I do have a degree in Social Work.

I am not employed by any organisation, university or local authority and do not represent the views of any of these.