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May is the official awareness month for Myalgic Encephalopathy and Chronic Fatigue Syndrome (ME/CFS), and May 12th (today) is the international awareness day. ME/CFS is a debilitating condition that I have suffered with since 2002. I don’t make any secret of my condition, but I don’t spend much time writing on the subject either. Therefore, it seems like a good time to join in with my fellow sufferers and tell you all about it. As well as describing what it feels like, I will also tell you how both the government and the media have made sufferers feel like malingerers.
Without further ado, here is my ME/CFS story …
What is ME/CFS?
There are several acronyms which refer to the same general condition: Myalgic Encephalopathy (ME), Chronic Fatigue Syndrome (CFS), and Post Viral Fatigue Syndrome (PVFS). Technically, I and many others can be classed as having PVFS, but most of us avoid using such a relatively unknown term. This range of names highlights how little knowledge there is about this condition. It’s my suspicion that there are many similar conditions, thus we get this group of umbrella terms. There is still debate over how to refer to ourselves. For the purposes of this post, I’ll stick with “ME/CFS”.
ME/CFS is a debilitating condition where sufferers experience any combination of the following symptoms:
- Persistent ‘crushing’ fatigue
- Little or no physical stamina
- Neurological pain
- Muscular pain
- Twitching muscles
- Poor concentration
- Poor short term memory
- Impaired balance
- Low quality of sleep
- Poor temperature control
- Irritable Bowel Syndrome
Each ME/CFS sufferer you speak to will experience a different combination of symptoms, and have differing severities of each. However, the characteristic feature that links them all is the ‘pay back’ after any period of activity. Some of us can feel ‘okay’ while we’re doing something, but the severe debilitating symptoms will arise after we’ve been active for a while. This is why one the most widely recommended coping strategies for us is ‘Pacing’. The idea is to try to find an equilibrium of rest and activity, avoiding the ‘boom and bust’ pattern that leave many of us bed ridden. Some say that the amount of activity should be slowly stepped up to aid recovery, also known as Graded Exercise Therapy (GET). However, I have yet to hear of a significant number of people actually recovering by using GET – it is clearly not a magic bullet. Even with pacing, the condition is unpredictable, which means trying to hold down a regular nine to five job is difficult.
How I became ill
In 2002, I was nearing the end of the first year of a PhD course. It was a position I was excited, and stressed, to be in. As well as doing academic research under the guidance of academics I admired and respected, I was taking on as much teaching work as I could to top up my income. My weekly routine consisted of rushing around, giving maths tutorials to undergraduate students, and marking their homework. In addition to that, I was doing outreach work with two local schools, giving advanced maths classes. If I was lucky, I had a day or so in my week to concentrate on learning the material I needed to know, for the research I’d be doing the following year. It was a gruelling routine, but I loved it.
In May 2002, I fell ill with a virus. Nothing extraordinary, just a snuffly nose and a cough, but I didn’t recover. As my fatigue worsened, I had to give up my teaching duties, and start doing my PhD work from home. Doing a PhD in any subject requires a lot of concentration and focus. As time went on, my ability to do just that was getting worse, and I couldn’t think clearly enough to carry on with my work. Meanwhile, I saw my GP a few times, but all he could find wrong with me was a vitamin B12 shortage. This was corrected by injections, but my condition didn’t improve. Therefore, I had to intercalate from my PhD, year after year.
My GP tried to attribute my persistent symptoms to depression, as many doctors do with ME/CFS. This is a subtlety that many doctors seem to miss. Of course people with ME/CFS are depressed, it’s a demoralising state to be in. Most of the time though, sufferers weren’t depressed before they got ill. In most cases, any depression is actually a symptom, rather than the cause.
The transition of stepping down from what I’d aspired to do since I was a school boy was difficult. My routine was gone, I was stuck at home everyday without a social life, and I had to claim benefits. However, the crushing fatigue, and deep-rooted, persistent pain in my muscles, made looking after myself a rather big distraction! As with any chronic condition, you have to work at getting through a day at a time.
The people who make living with ME/CFS worse
Unfortunately, actions by sceptical doctors, uncaring government departments, and sensationalist journalists, can have a massively detrimental effect on what is already a physically, and emotionally, devastating condition.
Once it became clear I couldn’t return to university, I had to ask my GP for sick notes. He refused, telling me that I was a “clever guy” and that I could “work out why” he wasn’t giving me sick notes. My interpretation of this is that he didn’t believe there was anything wrong with me, and thought I was trying to commit fraud. I fought my corner, and by going through my local patient liaison service, he was forced to issue me with sick notes. Later on, a new surgery opened in my area. I left my old GP, and I’ve been much happier with the Primary Care Trust (PCT) practice I’m now with. Dear Mr. Cameron, please don’t screw up the PCT, it actually works.
Finally, I got to see an immunologist at a private clinic (BUPA), after some friends suggested I might have ME/CFS. Sure enough, the consultant confirmed I was a text book case and referred me to his NHS clinic. After being passed around several more consultants, it soon became clear there was no medical help for my condition. The only available ‘therapy’ was to go on a course of Cognitive Behavioural Therapy (CBT). During my first session, the therapist was at great pains to emphasise that CBT was not counselling, so I consented to embark on a full course, as I was open to anything that might help me. In short though, the course made no difference to me, and it WAS counselling, just by another name.
The problem is that many in the medical profession treat ME/CFS as a psychological condition, when in actual fact it is a biomedical condition, and therefore psychological treatment is inappropriate. In my case, the only effect of CBT was to cause me even more fatigue by travelling to and from the sessions. In many other cases, patients are given exercises to do, which cause a great deal more harm than good, as described in these studies.
Applying for financial aid has been a consistently demoralising experience. I shall remain politically neutral by saying that both New Labour, and the Conservative Liberal Democrat coalition, have been clueless at how to help sick and disabled people. Sick and disabled people need help, encouragement, straight forward and fair rules, and a sense of self-worth. However, the exact opposite is achieved by the UK incapacity system, and its proposed reforms.
Benefit claim forms have questions about what you are mechanically capable of doing, along with a SHORT section where you can talk about your mental health. Nowhere in any of these extensive questions are there questions about one’s ability to maintain a certain level of activity. Certainly, someone with moderate ME/CFS can lift a bag of shopping, or get up from a chair without help. However, there’s no where to formally state that once you’ve carried a few heavy bags of shopping back home, that you’ll be recovering for several days afterwards!
Benefit claims are regularly reviewed, claimants have to attend a medical interview, and complete a renewal form. The UK Department of Works and Pensions employs a company called ATOS to conduct medical interviews. Read this distressing post on the “Where’s the Benefit?” blog about the treatment benefit claimants can expect from an ATOS interview.
In my own experience, prior to ATOS, I received poor service from my local interview centre. At my second review, I was assessed by a Chinese doctor, who could barely speak English. In short, I failed the interview. I appealed against the decision, and as part of the process, I received copies of the reports written about me. I was shocked to see how my answers had been taken out of context at every opportunity.
The mood at the tribunal was intriguing; there was almost a sense of knowing, both from my welfare rights representative, and the appeals board. It suggested to me that the appeals board were seeing a great many cases where people should not have been considered capable of work. They certainly didn’t take long to decide I wasn’t, and so I won the appeal.
Indeed, the more the government makes the work capability assessment (WCA) into a blunt, insensitive tool, the more people will have to justly appeal, and win. In turn, that process causes claimants a great deal of upset and stress, and costs the tax payer even more money.
Once you are in receipt of benefits, the rules make it somewhat impossible to get back into work. As things stand, people who are on Incapacity Benefit (IB), Income Support (IS), or Employment and Support Allowance (ESA), are allowed to do 16 hours of work a week, and can keep a mere £20 of anything they earn. Anything declared beyond £20 is deducted from the benefit for that week. What’s more, once you announce you are trying to work, it will trigger a summons for you to take part in ‘back to work’ interviews. These conditions provide a disincentive to anyone who wants to try getting back into work. Most of the time, for people who are tired and find it difficult to concentrate, just the paper work involved isn’t worth the £20.
For people who are too poorly to leave their house, the idea of being sent on courses is just overwhelming, and ironically unhelpful. In my view, the system is far too inflexible to help sick and disabled people do any work, nor do the above conditions reflect reality. When someone who is sick or disabled tries working, they don’t know how they will be able to cope. There is no reason for the DWP to assume it’s okay to immediately cut them off. What’s more, the idea of losing one’s security by simply TRYING to work, is enough to scare them away from doing so. The reforms I’d like to see to the UK system would have the DWP taking a personal approach by actually listening to the needs of individuals.
Via an all to keen media machine, the government regularly misrepresents the sick and disabled. The public are presented with a stereotype that everyone who is in receipt of benefits is some sort of fraudster. Figures presented in the media focus on how much money is lost due to “fraud and error”, with the emphasis firmly placed on the fraud part of the equation. In actual fact, benefit fraud only accounts for 0.8% of the total welfare bill (see the link below), while official error accounts 1.8%. However, the story you never see in the news, is how much the DWP under pays the sick and disabled, by error.
For an fantastically detailed and well researched article on the real cost of benefit fraud and error, please read What Has Happened to Welfare?
Below, are a two illuminating charts from that post, showing the real proportion of the cost of benefits and fraud to the tax payer.
Furthermore, sensationalist newspapers take great joy in frequently reporting about the benefit cheats who have been caught out. We can all agree that the proverbial window cleaner shouldn’t be claiming for a bad back. Then again, how many windows can that window cleaner clean at once? However, the repeated ranting in newspapers about “Welfare Britain” doesn’t help anyone (apart from those selling the papers). Claiming that the sick and disabled are somehow sucking the country dry doesn’t reflect reality. The end result is that newspapers inflame public opinion and make the already vulnerable sick and disabled people of the country feel worthless. Making someone feel worthless is not a good way to get them back into some degree of employment. For those who aren’t capable of doing any work, such a public mood could lead them to feeling suicidal.
Sadly, it would not be an exaggeration to say that the government and the media, just make the lives of ME/CFS sufferers worse. The NHS means well, but has nothing meaningful to offer. ME/CFS is thought to affect around 250,000 people in the UK, and there is an astoundingly little amount of money spent on medical research into ME/CFS. Therefore, I would be very grateful if you wrote to your MP, and asked for them to raise the subject in parliament.
The people who make ME better
Fortunately though, I’d just like to give thanks to the people around me, who know me, and know I’m not a “feckless scrounger” just because I’m too fatigued to go out to work nine to five. My friends and loved ones have all been accepting of my condition, and have done their best to understand. Simple understanding, and just keeping in touch with an ME/CFS sufferer goes a very long way. If someone can’t get out of the house to see you, it means a lot for you to just keep in touch and say ‘Hi’ once in a while.
The Internet and social networks have are fantastic ways for ME/CFS sufferers to reach out and find each other. Particularly searching Twitter for the following hashtags will yield hundreds of fellow sufferers: #MECFS, #CFS, #ME, #Fibro.
- The ME Association
- The ME Association Facebook Page
- Action for ME
- Action for ME Facebook Page
- ME Research
- ME/CFS Parents
- Sleepy Dust