May is ME awareness month; next week is ME awareness week with the culmination of our celebrations on May 12th, ME awareness day. So it’s good to know about all the ups and downs of awareness that’s going on right now…
1. An unrelentingly sick ME patient in Denmark is currently battling being institutionalised. Fortunately her doctor and a specialist do understand that she’s physically ill and want her on an IV to keep her alive, but the government have decided that they “equate ME with insanity” and want her locked up in a psychiactric hospital. The reason she got this sick in the first place was they forced her into a hospital and made her exercise… this also involved repeated psychological investigations, each of which found her to be mentally healthy. Prayers that she gets the physical assistance she needs to survive, as opposed to being locked up to die, would be appreciated (her name is Karina).
2. The “Lets Do It For ME” campaign are trying to raise £100,000 for some initial biological research into the causes of ME; one study sequencing genomes to discover all the viruses involved, and another exploring the relationship between ME and gut inflammation. So far they’re over 1/3 of the way!
3. The UK government have acknowledged that they aren’t doing enough to help Neurological illnesses, and as a result… they are going to do nothing about it. They have ignored all the advice and information, and are postponing doing anything for another 3 years.
4. The “Voices from the Shadows” documentary is being screened at the Scottish Parliament on May 8th, and at Edinburgh Cineworld on May 24th. You can buy it here, watch it online here, or my real-life friends can pop round and borrow the DVD from me!
5. The government’s replacement for Disability Living Allowance, PIP, is being auctioned off to popular and reliable firms (yes, that was indeed sarcasm), such as ATOS and Serco, allowing them to skim 20% off the money provided by taxpayers to help disabled people live.
6. The Scottish government’s cross-party group on ME is holding a conference on May 8th, seeking to combat the misconceptions associated with the disease and raise some awareness. I’m really lucky to be living in one of the only countries in the world that’s starting to do something about this disease – not that they’re even remotely close to treating it seriously, but much closer than most other places.
7. The MS society, in MS week (just gone) released a report detailing British societies attitudes towards the disease. MS is quite similar to ME, in terms of many of the physical aspects as well as the important factor of not looking ill. It reveals lots of things: people, despite knowing that illnesses like cancer are often undetectable outwardly, still constantly accuse those with “invisible illnesses” of lying. Careers and social lives are significantly affected just by other peoples reactions, even if their symptoms aren’t enough to prevent them from taking part. One significant finding was that it’s thought disabled people are exagerating their symptoms… in my experience it’s the total opposite! Disabled people are on the whole minimising their symptoms, and use up so much valuable energy trying to behave normally, when really they are in a lot of pain and suffering from even small tasks.
8. Despite the fact that since the 50s it’s been known to be a physical illness, and since the 60s it’s been classified by the World Health Organisation as a neurological illness; despite thousands upon thousands of scientific studies identifying physical aspects of ME and not one psychological study; despite years of campaigning by those too sick to really be carrying out such activities, ME is still viewed in most countries as a form of mental illness, best treated by exercise (scientifically proven to make you worse) and cognitive behavioural therapy (scientifically proven to be less effective than placebo). Let’s hope this year is a year of change!