Sickening

Would you like to believe we live in a fairly advanced age? We have wireless internet, wheelchairs that can now climb stairs, printers that can produce 3D products, things seem fairly advanced right? Well, here we are in 2015 and in Britain, there’s now a growing debate as to whether or not M.E (Myalgic Encephalomyelitis) or CFS as some know it, is actually a real thing. No joke, we’re in a world full of fast cars, smart phones and replacement limbs but we can’t decide whether or not a chronic condition thousands upon thousands of people have had is real, or a bullshit story that’s been peddled by lazy workshirkers for generations.

A study by Oxford University followed 481 people’s lives for two years, all of those people having ME/CFS and watched them go through years of medication and consultation and then decided the best thing to do was encourage them to adopt better outlooks on life and exercise more. According to the study results, three quarters of the group improved after going through therapy and nobody, if the study is to be believed, got worse after being put through this programme. Dubious, as ME/CFS severely limit mobility and stamina so forcing exercise on them seems like it could have negative repercussions. The PACE trial (Pacing, graded Activity, Cognitive Therapy and random Evaluation) therapy revolves around the idea of gradual exercise and CBT therapy, along with random visits from an assessor to see how you get on, which seems fair but this test leaves a lot to be desired and even more to be criticised:

1. Benefits of a positive attitude

Ok, first qualm is this whole brave face and positive thinking will fix your problems ideology. Firstly, if you think positively, you’re going to gloss over the reality of your struggle, participants might have reported an improvement to their assessor simply because they felt happier instead of actually physically healthier and researcher bias might lead the assessors to see what they want to see (They’re smiling more than I remember them doing last month, they must have improved etc.). Whilst therapy is beneficial to those with ME/CFS, need I state the obvious that therapy is beneficial to just about EVERYONE. Depression, amputation, gender-reassignment, a diagnosis of cancer – things all made easier to cope with by speaking to professionals but you wouldn’t make those patients’ lives better by telling them to just suck it up and go for a jog would you? Claiming a healthy attitude is a cure is some wishy-washy idealistic nonsense up there with curing anxiety by taking bold leaps or curing addiction by just saying no more often.

2. Paced graded exercise

This idea is nothing new, as a previous carer for someone with ME, I can recall numerous physiotherapists and so on manipulating the weakened limbs of my dear friend into weird positions and telling her to do this on a daily basis to build her strength up or whatever. Problem here is that said exercise can take a lot out of people with ME and CFS, sometimes it is a struggle for them to even sit up in bed or brush their teeth, let alone lift weights or cycle or whatever the trials suggest. The energy levels of a sufferer are inconsistent, in the space of a week I have seen my friend go from smiling and laughing and jumping to being a disheveled mess groaning through paralysis. Videos can be found and audio logs recorded of ME patients being FORCED into exercise, being told off like petulant children for being ill and there are countless stories of children being taken away or people institutionalised for having ME. I am not joking, imagine if someone got locked up for saying they had a brain tumour or cystic fibrosis! This is a condition that is too complex for our current science to fully understand and in our frustration, we want to refuse to believe it exists. ME is the global warming of the disease world – it’s too hard to think of an answer so pretend it’s not a thing and let everyone die.

3. Misleading information (Lancet 2011 Editorial and Oxford Study)

The Lancet published a paper in 2011 that said 30% of their patients with ME/CFs improved after CBT and graded exercise yet this is based on misleading trials. Patients were asked to rate their fatigue on a scale of 0 to 11, any lower than 4 and they weren’t included in the study and they had to rate it as 6 and above to be considered for further trials. Fair enough? On a scale of 0 to 11, they called a level 6 fatigue “normal levels”. WHAT? How is that normal? Are they suggesting everyone, by default, should feel relatively shit all the time? Beyond that, patients weren’t asked throughout “How do you feel now? Still 6 or worse?”. Nope, just took their initial answer and ran with that. The Lancet made a publication based on a stupid definition of normal fatigue and thus padded out their study with people who felt ‘relatively’ better. Add to this the Oxford study that even admitted it wouldn’t work for everybody and needs further research done and there you have it – FURTHER RESEARCH NEEDS TO BE CARRIED OUT. Accurately I might add and it’s fucking embarrassing I have to.

4. More Misleading Information (Psychological Medicine)

Of course, there are numerous culprits here, Psychological Medicine conducted their own tests. Using the scale again, from 0 to 100, 100 being fit as a fiddle, you had to score below 65 to enter the trial and above 60 was considered healthy. See a problem immediately? If you scored 62 coming in and left scoring 63, you showed up on the statistics as ‘healthy’, therefore cured! With such ridiculous standards, patients could be counted as cured with minimal effort on the part of the doctors involved, any improvement amplified by this scale. The journal even published criticisms of this scale but made no effort to retract their claims that “22% of the study group recovered through therapy”, which as we can see, recovery is bloody easy if you need a score below 65 to enter but a score above 60 to be called cured. Furthermore, there were four criteria used, one a total dud criterium of ‘meeting no clinical definition’ and you only had to meet one of these criteria to count as improved. Ergo, a study that was hard to qualify for but easy to count as improved as a result of taking part. Lies then, carefully manipulated data and misleading weakened standards to present statistics the researchers wanted, instead of the actual truth.

I’m angry. I’m fucking livid. This is nothing more than the neglect and abuse of no fewer than 250,000 people in Britain alone and calling their disability a simple case of the blues that can be wished away with a big enough smile. If these misleading studies gain ground in the public eye as fact, how long until ME/CFS no longer count as grounds to claim disability relevant benefits? Are we going to force people with chronic pain, hypersensitivity, restrained mobility and poor cognitive function into work despite the obvious effects it will have on them? I wouldn’t put such cruelty past the same government seeking to scrap the Human Rights act.

If you’re angry too, click the link below to visit ME Action, a website set up by those dedicated by fighting for our loved ones who groan in agony from the shadows. We must not stand by and let these people become abused as lazy mopes needing a boost of life and a hug, they need medical consideration and each of them needs a care plan tailored to them – some can manage to walk, some can barely move their head – it’s not a quick fix. Keep researching better solutions, medications and coping mechanisms and don’t just dole out this flimsy “Smile and get over it” horseshit. There are petitions, sign them!

http://www.meaction.net/

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2 thoughts on “Sickening

  1. How very refreshing to read an article which is written in lay man turns about a condition that seems to create so many negative comments from people who have never suffered from or cared for someone with ME. Typical I have brain fog today and not managing to write what I really want to say other than a huge big thank you for taking the time to write this article and supporting people with ME.

    Like

    • It’s an important issue, to me and to those close to me. I cannot see how the world of science and indeed the government are prepared to marginalise and trivialise such a devastating health condition.

      Like

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