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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Infectious Panic

Trigger Warnings – Death, Infection, Illness

Ebola. The dreaded word surfaces here on my blog as it does across the news, with screening for this virus commencing in airports across the western world as people fear infection in both the UK and the USA. At this point, only a hermit hasn’t heard of the virus and it has become a topic for discussion in all corners of the media, even the obscure blog of a nerd from Shrewsbury but I digress, this is too big of an issue to pass up and the truth needs to be heard, as well as pulled apart from the hysteria

Shepard Smith of Fox News managed to summarise the situation with a cold calm logic and whilst I might never again suggest you watch Fox News coverage, this man detaches himself from his political and professional affiliations to state the facts in a well-presented manner so by all means search him on YouTube as “Shepard Smith Ebola” and watch what he has to say if you feel worried by what you hear in the news, especially if you are from the USA

The facts are as follows – A man contracted Ebola overseas and was dying of the illness in a hospital in Texas, the illness being at its most contagious when someone is dying of the symptoms. A health care worker caught the virus from this man and is now in isolation but she appears to be doing well. The CDC expected more people to become infected and this was true, another health worker has caught the virus and she will transferred to isolation. However, it is true that before she showed symptoms she boarded a plane but as we know, Ebola is only contagious when the symptoms are showing and so the passengers of that plane should be fine but just in case, each passenger is being contacted and monitored through health checks. The chance of infection on the plane is slim to none. Screening operations are now in place across the USA and the UK

Now I know you’re worried, you’ve seen the headlines marking the coming of a plague but you must remember that headlines such as “EBOLA TERROR!” or “WIDESPREAD PANIC!” sell, headlines like “A FEW PEOPLE ARE ILL” or “SLIGHT OVERSIGHT ON A PLANE” or not shocking. You may also note that David Cameron, Prime Minister of the UK, called Ebola the single biggest threat to the health and safety of the British people but this is simply untrue – leaders need to appear strong, David Cameron is trying to look like a man protecting the nation from a horrid threat but in truth, here in the west, we are blessed with doctors, hospitals and exhaustive counter-measures against epidemics. Elections are coming, in the UK and the USA, the leaders need to seem strong, the opponents need to undermine them, so whilst the parties in power play the hero, their opponents call them out as inefficient imbeciles and so a cycle of fear is created as the people don’t know who to trust but the truth is this – Ebola is a deadly disease, it has killed thousands, but the thousands it has killed have been those without access to medical facilities, clean water or professional support. If you have a computer to read this on, you will not be at risk unless your doctor has contacted you specifically with their own concerns

Frankly, I think we’re being insulting to the thousands affected by this disease in Central and Western Africa by making a lot of fuss when there has yet to be an outbreak. Thousands are dying, numbers so difficult to track that even the UN admitted to fucking up, and here we are buying ourselves face masks and hand wipes and screaming bloody mercy when it has yet to kill even ten of us.I admit, as I write this, I am lumping in those deaths in Africa as a number, I am not exploring the depth of the damage, I don’t know the families, I don’t know the communities and I don’t know just how many have died but we westerners have a way of seeing deaths in places like Sudan and the Congo Republic as just a sad reality we like to ignore except when we feel generous. You are safe, you live in a world of hygiene and safety procedures, the dead are buried correctly and you can access clean water. The people affected in Africa can not, they are dying because they do not have the sophisticated medical systems we have available to them, they have to simply make do, unlike us

The virus is not easily caught, it is not like the cold or the flu, you are only at risk if you handle the bodily fluids or dead body of someone infected, thus why the health care workers were affected, they were treating a dying man, some part of them was inevitably going to contact some fluid. The virus is fragile, it can survive in a pool of blood or sweat but can be destroyed by cleaning products or hot soapy water. Experimental vaccines are being tested and if caught early, the symptoms can be treated and support will be put in place. You are not going to die, calm down. If you are scared, consider where you read the information – a newspaper, an online article, on the TV? The media profits from your panic, businesses will sell you protection you don’t need (Such as the snake oil scam) and the leaders of the world will tell you it is a difficult challenge they face to eradicate a fearsome curse when in truth, Ebola is only a real concern if you are living in squalor. I have no profit to be made in telling you anything, I am not paid to blog, I am simply a man with an opinion, some facts and a computer, it is entirely your trust whether or not you trust my words but a thorough search will support me, from a logical standpoint

If you are scared about your health, make sure you get your flu jab, the flu kills tens of thousands every year because people underestimate it. Heck, the plague, the flippin’ plague, kills a thousand American people a year, you’re more likely to catch that than Ebola. Scared of the plague? Of the flu? Of Malaria? No, well then Ebola is nothing to you, Ebola is far from reaching the death count of those diseases and that’s not because of time, Ebola has existed as long as Star Wars has and has yet to reach ten thousand deaths, the flu tops that in a year. Stay calm, ignore the hysteria and do what you would normally do to stay healthy – wash your hands, bin your tissues, see a doctor if you are unsure of anything. If we continue to shout like madmen over anything slightly wrong and scrabble around for safety, how will we ever band together in a real crisis? Don’t cry wolf over this because if it does become an actual worldwide epidemic, we need to be calm, we need to be united and we need to take action, not cower in fear crying

I hope that has brought you peace of mind readers and if Ebola still concerns you, donate to a charity working to fight the spread of the virus. Thank you