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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Secret Scars Revealed

Trigger Warnings – Domestic abuse, death, violence

News of the day, at least in the UK, is the talk of Theresa May’s efforts to crack down on paedophilia, terrorism and domestic abuse. The first two, they’re a whole other blog post, maybe tomorrow as a two part special but I don’t know, we shall see, but the third topic is the one that interests me because if these proposed plans come into place, we might see faith in the system be restored for victims across the country

For those of you unaware of these plans, Home Secretary Theresa May has announced she wants emotional and psychological domestic abuse, as well as coercive control over a spouse or partner, to be considered just as serious as physical assault so abusive spouses could just as easily face fourteen years in prison for shouting at their partner as well as actually hitting them. For the first time in this country, it will be a criminal offence to control or manipulate a partner through verbal abuse as well as physical abuse. The idea for this came about after the research carried out by Women’s Aid that revealed most victims do not contact the police until after thirty incidents of abuse. Yes, you read that correctly, thirty, something has to be done and this might well be step one

Women’s Aid made a big contribution to the efforts of the Home Secretary, mostly in research, such as revealing one incident is reported every thirty seconds but less than 7% of those reports actually result in the perpetrator being convicted. Roughly 1.2 million women are victims of domestic abuse each year but they suffer in silence and this is believed to be because many victims have little faith in the power of the police to actually do something. Obviously, this is not the only reason, I’m aware, there’s conditioning and a desperate hope things will resolve themselves and of course a fear of escalation but this is a valid reason nonetheless and if we can fix this problem, it’s one less problem for people in that situation.

A common issue is police often only deal with the incident they were called to resolve and either neglect past incidents or are unable to do anything with a lack of evidence. The new bill, expected to pass through in the new year, will allow police officers to do more to help and will expand the meaning of the phrase ‘domestic violence’ to mean more than hitting a spouse or partner, it will mean controlling them, insulting them, doing anything to them that makes them feel trapped or powerless, and this is important. The US already has similar bills in place and the results were astonishing – a 50% rise in reported incidents as more victims summoned the courage to seek help. With every reported incident, there is usually a history of unreported incidents so maybe now victims will be able to discuss more of their past with those handling their case

I’m fully behind this, I’ve had friends in abusive relationships and seen them unfold, sometimes first-hand, and the physical stuff only scratches the surface. A black eye, a bruise, it heals, it goes away – but controlling them, making them feel like they DESERVE to be objectified and abused, that sticks, it warps their perception of who they are as people. Psychological scars can’t be fixed up with the passage of time, it takes extensive therapy and consolation and I’m pretty sure the after-effects of such relationships stick with some of the people I know even now. As for financial control, well, to have anyone control your money is to be at their beck and call, it’s a flaw in our society as a whole but to have someone who is supposed to love and trust you do it? I can’t even imagine how that must sting

I hope to see this bill passed next year, so far it has received nothing but support from charities and other politicians so all seems well to get this the green light – any form of mistreating another human being is wrong and should be treated as such, breaking someone’s spirit is just as horrid a crime as breaking their arm or their leg. Here’s hoping we continue to make strides in getting those responsible what they deserve and those in trouble into a safe environment, to think less than 7% of those reported actually feel the consequences, well, that’s just upsetting. With the bill in effect, we may even see the government take less money out of the funding for public services to deal with the rising reports, that can only be a plus. I really do hope this will be the step forward we are dreaming of it being and that justice will come to those in need

PS – If you are a victim and need help, here are some contact details

UK (Female) – Women’s Aid – 0808 2000 247

UK (Male) – ManKind Initiative – 01823 334244

US/Canada – DAHMW – 888-743-5754

Like and Share, you mindless mortals! (Originally Published – 10th September 2012)

Hello, Jacob Wolfe clocking in again at the factory of foul ranting, after a lengthy holiday that mostly consisted of working my nuts off, here, there and everywhere I could be made to do something for somebody. I’m sure you’ve all been wandering what happened to these once-upon-a-time weekly rants but rest assured I’m going to try and get back into routine so you don’t have to miss out on the hilarious results of frustration plus keyboard. To those of you checking out my work for the first time, you haven’t missed out on too much. The premise is simple, I vent out my anger at a failure within modern society as a page of fanciful ranting and then put up on the internet for people to either laugh at, or be offended by so I can laugh at them. I must warn you in advance, this isn’t friendly stuff so if you’re of a nervous disposition or easily offended, go read something more cheerful. If you’re still here, you’re no doubt after some entertaining vulgarities aren’t you? Oh go on then

My topic today is related to Facebook and in particular, one of the most annoying things about it. I’m not talking about the ever changing layout that leaves people in tears, desperately clawing at their screens because change is bad. No, I’m on about something much much worse. ‘Like and share, ignore if you’re heartless/hate gay people/want to die a grizzly death involving your eyes, a melon bowler and several burly men etc.’ I don’t really have to explain why this is so bad do I? I mean, it’s smegging obvious what’s so bleedin’ annoying about this airy-fairy drivel and if you can’t see the problem, you’ve probably liked and shared one of these stupid photos or maybe you were the one who uploaded that picture of a dying child, demanding I share the photo or you’ll appear under my bed with a knife? By the way, appearing under my bed would be an impressive feat; it has no legs so the space under my bed is as thin as a sheet of paper.

The offending photos range in appearance, usually something harmless and brain dead along the lines of ‘Share if you like Black Veil Brides. Ignore if you’re a Bieber fan’, which, whilst a strong motivation to not ignore your photo, I don’t like Black Veil Brides either and the idea of giving you my attention makes me feel like vomiting. Occasionally, the photos get a bit wedged up their own ass and preach to you about heaven and hell, saying that God will only save those who like the photo of him posted on Facebook. I have read the Bible and I am pretty sure, there isn’t a Psalm Reading along the lines of ‘And so the loyal shepherd liked thy holy spirit’s Facebook photo and so he and his flock were spared from the vengeful flood’. I may be wrong. God’s losing it if he really has to run heaven as an online subscription service, perhaps he’s feeling the effects of global recession and the economic value of the afterlife equates to an amount roughly the same as a Greek saving account.

However, I can put up with the harmless photos of puppies, cartoon characters and various musicians pulling cute faces at me, hoping I’ll grace them with space on my profile because in all honesty, they’re just the end results of creepy weirdoes using pictures to get a couple more friends and the only real way to avoid them is to scroll past them quickly and hope that you don’t get murdered by a ghost or banished to the void between dimensions. I may be irritable and grumpy but I let this slide because it’s essentially just the only way these monkeys can socialise. On the other hand, there are times where the photos can just go too far. I know what you’re thinking, I dance on the edge of taste myself but if you look back at my other rants, I do not dirty my work with anything much too vulgar. Cancer, specific national traumas, disabilities are just three topics that I make sure not to make crude jokes about because I know it’s entirely tasteless and that I will actually be murdered in my sleep by a victim of such topics. However, the photos don’t stop at the border of what’s a harmless picture for some likes and what’s actually just cruel. The photos and their creators are like some sort of psychopathic comedy nightmare, moving into areas that you just cannot poke at for attention. I’m sure we’ve all encountered the photo of a dying baby, suffering with a terminal illness, an abnormal growth or a victim of cancer and below the picture is a tragic back story and this command to share the photo a million times or the baby will die. Firstly, I don’t want anyone to think I’m a heartless old man who thinks those that are ill should die off and leave room for me and I certainly don’t want anyone in the world to have to live with such horrid illnesses, nor do I wish them upon others, even the people I wouldn’t save from being hit by a bus. I just want to make it clear, the photo is not a miracle of medical science and sharing it has no benefit for the child. Doctors get to work the moment they receive a patient, case studies are not uploaded onto Facebook for the public to decide who gets medical attention and who gets thrown out. If a child receives less than one million likes on Facebook, unless the child has already passed away, the child is most likely stable or on the path to recovery whilst receiving support from a number of trained doctors and surgeons. However good your intentions may be, you cannot save a live by making a photograph appear on the Facebook news feed of half your home country. Correct me if I’m wrong but no global catastrophe or terminal illness was ever prevented by a photograph on the internet

Allow me to tell you the story of a little girl named Isobel, a new-born infant that was suffering with a terrible cancer on her brain that appeared as a lump on the side of her head. I mean to tread softly as possible here and I hope nobody takes offense so please let it be said, anything that is interpreted as rude is not intentional. Please also note the information may not be 100% accurate as I am relying on information received from people who identified with my outburst on the comments of her photo. Isobel was photographed, lying on a bed with this growth and clearly looking uncomfortable as she bravely fought against the cancer but what she didn’t know, nor did her parents, is that the strictly confidential photograph was leaked onto Facebook and made into an attention whoring campaign for admins on various tactless pages (You know the ones I’m talking about, the ones with page names written in something even a dyslexic person can spot spelling mistakes in and that offer you 2000 extra friends if you add their shirtless admin and tell him your name, age, occupation, bathroom habits and so forth). The photo came with a brief misinformed back story and the demand that people must share the photo for the child’s sake and that failure to do so is proof that you have no heart. Comments were disallowed unless it was sympathetic but still, the wiser users of Facebook, albeit the grumpier ones, voiced their disgust at what they saw. I would like to inform you all that the child in the photograph survived and received the necessary surgery to remove the cancer; the parents are overjoyed and the whole family is moving on gradually. Now I can’t understand why anyone would use the personal struggles of a stranger just to make themselves popular, it’s sick. The photo is available across the internet and it seems to just say to anyone who looks at this popularity campaign ‘This is the length that an idiot will go to if it makes them popular’. Heck, you’re not even impressing your friends, you’re trying to appeal to people you’ve never met and never will. Isobel’s family were outraged and awash in tears as they watched this photograph make its way across the world for all the wrong reasons. Isobel isn’t the only victim here. Starving orphans, seriously ill babies and sufferers of natural disasters are all exploited as ploys to get Facebook admins noticed.

I do not wish these people to die or become ill but should they ever suffer, I may just reach for a camera. However then again, I might not, for fear of sinking to their level. I couldn’t live a life where my moral standards sit lower down than the Earth’s crust. I don’t normally end on such sombre notes and I hope you all enjoyed this rant as much as I hope it made you think but to any admins out there, the line in the sand should not be crossed for the sake of a few more likes. I can tolerate your bombardment of photos of Bieber and Biersack, your pictures of Satan, of Jesus and of ghosts but if you ever exploit the suffering of another human being to get noticed, you’re not somebody I want to know