INTERNATIONAL M.E. AWARENESS DAY, 12 MAY 2011
WEB SITE http://twitter.com/ME_CFS
Myalgic Encephalomyelitis Chronic Fatigue Syndrome, known as M.E. or C.F.S.
This horrible illness which can last for decades is thought to result from poisoning, possibly from chemicals in day to day use in the environment all around us. Possible culprits are drinking water fluoride, additives in food, amalgam fillings leaking toxic metals, deodorants, herbicides used by local councils to spray roadside verges, pesticides used by farmers on crops and livestock, and organo phosphates used to treat new carpets, curtains, timber, etc. to prevent insect infestations. It is thought to be similar to Gulf War Syndrome or Nerve Gas Poisoning.
Apparently, anyone under stress naturally loses magnesium from the body, making them more susceptible to poisoning from the chemicals we are all exposed to. Underlying stress from every day life can cause people to get run down, and severe stress, such as the trauma of divorce or bereavement, or after a serious viral infection, can put people at risk of developing M.E. Healthy fit and active people can suddenly find themselves sentenced to solitary confinement within their own bodies, unable to use any muscle without extreme pain resulting.
M.E. sufferers sometimes look worn out, and sometimes they look fine. However, the illness is there all the time and any activity at all, even just standing up or walking, will result in extreme fatigue, pain, and exhaustion.
If a typical M.E. sufferer was to try to go out, say to go shopping, they could probably manage a short drive to the supermarket and strangers seeing them get out of the car in the disabled parking bay might well think they were faking needing a Blue Badge. Because a M.E. sufferer looks normal and able to walk, a casual observer might believe they are able bodied and healthy.
Unfortunately, the muscles soon start to feel tired, with the oxygen not being transferred to the cells as it should be. After just a few minutes of walking around a supermarket, the M.E. sufferer would be finding his muscles in his legs starting to feel strange. After 10 minutes, he would be feeling fatigued. After 20 minutes, it could feel really 'wrong' in his legs, like the flesh is wet beneath the skin. After 30 minutes, he could be really struggling. After 45 minutes, he might feel no longer able to stand, his back feeling broken and his chest heaving, as well as his leg muscles being so depleted. An hour or more of exercise without any rest will certainly always cause intense pain in the muscles. Even more walking might even result in collapsing to the floor and loss of consciousness.
The sight of a M.E. sufferer returning to the disabled parking bay after just a couple of hours doing some shopping would worry many people into thinking they needed to call an ambulance. Unfortunately, this is only the start of the effects of the exertion. For anything up to 48 hours afterwards, the muscles will hurt more and more, the suffering increasing in intensity, with explosions of agonising pain, accompanied by symptoms of sweats, fevers, acute cramps, pins & needles, and burning along the nerve endings, before finally it subsides and our typical M.E. sufferer begins to feel more normal again, at which time they might just be able to attempt to go shopping once more.
Please remember, not all disabled people look disabled all the time! Our typical M.E. sufferer will need his disabled Blue Badge for the times he his in enormous pain and hardly able to move, even if when you see him he may look to move just fine. Not all disabled people need a wheelchair or crutches all the time - the condition of M.E. sufferers varies from hour to hour, depending on what they have done. The M.E. is still there and the M.E. sufferer is still ill. So please have sympathy and show compassion.
On top of all this, M.E. brings with it hyper-sensitivity and a host of allergies. Some people cannot go near animals, some have to avoid all chemical wipes, detergents, perfumes, deodorants, and air fresheners, and some cannot go in swimming pools as the chemicals in the water would burn off their skin. Other sufferers have damaged or whitened skin develop. Once you have M.E. nothing in your body works properly - anaesthetics for dental work or operations are unlikely to work as they should, possibly not at all. Plus, the weak muscles in the tummy means that most M.E. sufferers also have irritable bowel syndrome type symptoms to have to cope with as well, sometimes with hugely swollen tummies.
So all in all, M.E. is very unpleasant and it's ramifications prevent most people from having any sort of normal life. People with M.E. are severely curtailed in what they can manage to do. Following exercise, after attempting pretty much anything, the resultant extreme and intense, often agonising pain and suffering makes them disabled.
Much of the time, sufferers are so ill that they cannot go out and are not seen. Friends can think sufferers have moved away, as often they are confined to bed for years on end. Sufferers are only seen on good days, when they are actually well enough to go out. The rest of the time, they are out of sight, out of mind.
Most people spend several years pretty much confined to bed when they first get M.E. Around 5 years lost from their lives would be fairly typical. As this is very hard to come to terms with, most M.E. sufferers get very isolated and depressed, especially when doctors offer no treatment or cure. Most M.E. sufferers don't get taken seriously by doctors after they are diagnosed with M.E. and many are treated abominably. The NHS do NOT help anyone suffering with this illness. It's even common for doctors to suggest tests that actually make the M.E. much worse - for instance, there is a standard test that hospitals do to check heart pains by asking people to run on a treadmill, which is impossible if a person has M.E. and cannot stand much of the time, let alone attempt to run!
Most M.E. sufferers feel they have an illness as severe as Cancer or AIDS. Indeed, it does lead to many dying young, with secondary health problems usually put down as the cause. Yet most M.E. sufferers are not treated with anything like the same degree of kindness or compassion as people with other serious illnesses.
Bizarrely, sometimes doctors, friends, and family can adamantly refuse to believe there is anything wrong and just try to ignore M.E. like it doesn't exist. Sometimes close relatives find it easier to think the M.E. sufferer is just feeling sorry for themselves. Acknowledging the true horror of M.E. and realising just how dreadful it actually is... well it seems to be just too much for some people to contemplate. For the fortunate ones, having the support of good people around them is the only thing that makes anything resembling a normal life possible. Someone to care for them after doing anything, even if they are in lots of pain, does at least mean they can do something.
After some years, the condition does tend to lessen, with many finding they can do a bit more than they could before exhaustion and pain set in - but for most, the illness never goes away completely. Some never get out of bed again. Some take their own lives rather than face living with it. It takes enormous courage and strength of character to keep going and attempt to come through it all.
Years later, our typical M.E. sufferer may still spend part of the day having to lay down and rest, may find several days a week it is impossible to do anything, and may find stress causes the severity of M.E. to get worse again. Catching a cold or flu virus for a normal healthy person is inconvenient - for an M.E. sufferer, it can result in explosions of pain, burning nerves, and feeling terrible.
Because M.E. is not being taken seriously by many governments, and very little research into any sort of treatment or cure is being undertaken, 12 May 2011 has been designated 'INTERNATIONAL M.E. AWARENESS DAY'.
According to recent research announced by Dr. Montoya at Stanford Hospital in California, USA, the illness seems to revolve around the immune system's response to pathogens found inside cells throughout the body - you can watch the full video at http://www.youtube.com/watch?v=Riybtt6SChU
Dr. Montoya is emphatic that ME / CFS is not anything to do with anything psychological and says that in the end the medical community will need to apologise to the patients they have treated so badly.
Dr. Montoya reports how many people are only 30% of what they should be for decades of their lives, and details severe disabling fatigue, muscle pain, joint pain, twitches, a complexity of symptoms, brain fog, difficulty concentrating, and a whole host of very nasty, very real symptoms people are forced to live with - with no help from doctors!
Stanford Hospital, who are now researching this and according to Dr. Montoya, working on it very hard, have set up a specific ME / CFS website http://chronicfatigue.stanford.edu/
On 2 February 2011, ME / CFS was debated in the British Parliament. You can watch this on BBC Video at http://news.bbc.co.uk/democracylive/hi/house_of_commons/newsid_9382000/9382412.stm
Ian Swales MP for Redcar began the debate with a breath of fresh air by reading out an honest statement of what ME / CFS is really like...
"I begin by reading what a constituent of mine, Jan Laverick, who suffers from Myalgic Encephalomyelitis, wrote to describe her condition:
- ME is sudden and extreme muscle weakness to the point of not being able to lift a glass.
- ME is collapsing with exhaustion and not being able to move for hours.
- ME is struggling to sit up long enough to eat a meal that has been placed in your lap.
- ME is tachycardia, seizures, paralysis and black outs.
- ME is sensitivity to light, sound and touch.
- ME is extreme abdominal bloating, nausea, loss of appetite, excruciating stomach cramps...
- ME is daily fevers and sweats.
- ME is inflammation and horrendous joint, nerve and muscle pain.
Imagine suffering from these symptoms only to find there is little research into the cause or cure, that you might not be taken seriously by your GP or the benefits system.
Your condition might even have been dismissed as 'yuppie flu'.
I welcome the fact that the Department of Health now accepts ME as a genuine medical condition. However, it is clear from speaking to sufferers and medical professionals that diagnosis can still pose a problem because ME symptoms are similar to those present in several other medical conditions. I recognise that one of the main obstacles to the adequate treatment of ME is the lack of knowledge and consensus about the disease, and I will argue that funding and research must be focused on the biomedical factors involved, and not simply on managing the psychological symptoms."
It was fantastic to hear an MP stand up and speak these words. For sufferers of ME / CFS, this speech was akin to William Wilberforce standing up against the injustice of slavery. Congratulations to Ian Swales MP for being brave enough to declare the emperor isn't wearing any clothes!
Over 17 million people around the world suffer from this appalling illness, with hundreds of thousands ill with it in the UK alone - yet the UK government spends almost nothing on research. In fact, the latest thinking from the UK health minister is to encourage people to have "graded exercise". Imagine the furore if cancer research was no longer funded, and the government just told sufferers to do a bit of exercise!
For years, ME / CFS sufferers have been fobbed off by the medical establishment, given terrible advice by hospitals, laughed at by doctors, ignored by nurses, and generally ignored by the NHS who couldn't be bothered to treat anyone with this appalling illness with seriousness or any degree of sympathy or civility. ME / CFS sufferers were not believed. ME / CFS sufferers were treated as malingerers and scroungers. ME / CFS sufferers were even referred to psychologists and told they were imagining being in appalling pain!
Every practitioner of medicine should hang their heads in shame. It is clearly time for the medical establishment and governments to come clean and give ME / CFS sufferers a formal apology.
NHS Health Minister Burstow needs to do much more than say a miserly million quid will be spent on looking at the symptoms. It really is such a disgrace, there is no wonder that many suspect the government knows exactly what the illness is and conclude this must be a cover-up to prevent mass compensation claims. Surely, they say, no government could be that stupid to actually think this is not a serious physical illness? One which needs some serious funding to solve, on par with Cancer or AIDS? Then again, surely no human being could be that cruel and callous to leave people with a terrible ultra-painful physical illness to suffer?
Lives are being wrecked and human beings abandoned, left to suffer and treated like they don't matter. If you live in the UK and hear politicians, activists, doctors, and nurses defend a "wonderful National Health Service" on the telly, if you have ME, you look at screen with a mixture of incredulity and anger. In the UK, as soon as you are told you have ME, the NHS is mostly not available to you any more and you will never get treated properly again. Sufferers report being ignored, being ridiculed, and being treated in a condescending manner, as if you have a mental illness and need a pat on the head to help you calm down. You don't get any treatment. You don't get any real help. You don't get any cure. On top of that, the NHS doesn't recognise your illness, and doesn't treat you like you are even ill. For many, doctors and nurses become people to avoid and fear - you learn not to treat most as people who will help you. Doctors and nurses are not the friends of people suffering from ME, one of the worst and most painful illnesses it is possible to be afflicted with. Many in the medical profession know nothing about this illness whatsoever, many can't be bothered to learn, and many more won't ever take you seriously.
The British as a nation pride themselves on justice. When will it come for sufferers of ME, the last of the second class citizens waiting to be recognised as having being treated appallingly?
TWITTER http://twitter.com/ME_CFS
ME_CFS
@CathyHaglington RT @ME_CFS @iswales Dear Ian, a big THANK YOU for putting an accurate portrayal of ME forward in your speech. #mecfs http://goo.gl/rR9fH about 1 hour ago via web
@iswales Dear Ian, a big THANK YOU for putting an accurate portrayal of ME forward in your speech. #mecfs http://goo.gl/rR9fH (BBC video) 16 minutes ago via web in reply to iswales Retweeted by you
iswales
Good feedback from the ME community on my speech today. They don't seem quite as happy with Minister Burstow's response. 8:34 PM Feb 2nd via HTC Peep Retweeted by you and 8 others
ME_CFS
NO HELP for sufferers of #me #cfs #mecfs ABANDONED BY THE NHS! Not a single penny being spent on this terrible illness caused by poisoning! 36 minutes ago via web Retweeted by you
ME_CFS
2011 UK PARLIAMENTARY DEBATE - http://news.bbc.co.uk/democracylive/hi/house_of_commons/newsid_9382000/9382412.stm #mecfs #me #cfs #nhs 34 minutes ago via web Retweeted by you
ME_CFS
All Doctors must watch this http://news.bbc.co.uk/democracylive/hi/house_of_commons/newsid_9382000/9382412.stm #mecfs #me #cfs #nhs #medical 33 minutes ago via web Retweeted by you
STANFORD HOSPITAL REPORT -
#mecfs CASE: Stanford Hospital report on ME / CFS.... http://t.co/knzcVbw about 2 hours ago via web
75% of people with #me #cfs #mecfs are female. about 1 hour ago via web
It is important to bring everyone suffering from #MECFS #ME #CFS together to share experiences - so please follow us and share your story! about 1 hour ago via web
#mecfs CASE: http://t.co/knzcVbw #ME #CFS IS PROBABLY CAUSED BY TOXIC PATHOGENS / CHEMICAL POISONING & THE IMMUNE RESPONSE TO THAT. about 1 hour ago via web
#mecfs CASE: http://t.co/knzcVbw "main goal is to avoid the patient crashing" about 1 hour ago via web
#mecfs CASE: http://t.co/knzcVbw research - lots of focus on why the illness lasts so long, often for decades, without killing the sufferers about 1 hour ago via web
#mecfs CASE: http://t.co/knzcVbw "Suspect immune response to pathogens hiding inside the cells" = TOXIC CAUSE! about 1 hour ago via web
#mecfs CASE: http://t.co/knzcVbw "Several pathogens have been reported to trigger #me / #cfs and cause the illness" = TOXIC CAUSE! about 1 hour ago via web
#CFS #ME #MECFS If this illness is caused by environmental poisoning from chemicals (after stress), that explains why NO virus is found! about 1 hour ago via web
#ME #MECFS #CFS Name "Myalgic Encephalomyelitis" is too long; the name "Chronic Fatigue Syndrome" is misleading as this is more than fatigue about 1 hour ago via web
#mecfs CASE: ... people get twitches, as well as severe muscle fatigue ... it can go on for decades ... http://t.co/knzcVbw about 2 hours ago via web
#mecfs CASE: ... people suffering from ME/ CFS get depressed because their lives have been taken away ... http://t.co/knzcVbw about 2 hours ago via web
#mecfs CASE: ... ME / CFS ... starts from immune response to outside agent... http://t.co/knzcVbw about 2 hours ago via web
#mecfs CASE: severe disabling fatigue, muscle pain, joint pain, a complexity of symptoms, difficulty concentrating... http://t.co/knzcVbw about 2 hours ago via web
#mecfs CASE: perhaps 17 million+ cases of ME / CFS worldwide http://t.co/knzcVbw about 2 hours ago via web
#mecfs CASE: our dream is that one day the medical community will apologise to sufferers for not believing it was real http://t.co/knzcVbw about 2 hours ago via web
#mecfs CASE: you have a disease you have no control on http://t.co/knzcVbw about 2 hours ago via web
#mecfs Latest from Stamford in the USA >>> http://t.co/knzcVbw about 2 hours ago via web
#mecfs CASE: a small amount of mental, emotional or physical activity or stress can cause extreme crash ... muscle pain http://t.co/knzcVbw about 2 hours ago via web
#mecfs CASE: 30% of what you are for 23 years... 70% brain fog... jumbled... headaches... http://t.co/knzcVbw about 2 hours ago via web
Check this video out -- Chronic Fatigue Syndrome http://t.co/knzcVbw via @youtube 1:16 PM Mar 13th via Tweet Button Retweeted by ME_CFS
ANDREW HAGLINGTON
In 1992, following a skiing injury and suspected poisoning, Social Group founder Andrew Haglington was diagnosed with M.E. and he spent the next 5 years seriously ill and largely confined to bed. His situation was made worse by being abandoned by his first wife of 14 years and the stress of an acrimonious divorce.
It was the loneliness and isolation of the illness that caused Andrew to find out first hand how difficult it was to make new friends, and in turn led him to identify the need for a mechanism in society whereby people could connect. Fighting to overcome appalling ill-health, constant pain, and weakness, Andrew somehow managed to forge ahead to set up The Social Group in 1997 and invent modern-style "social networking".
Over the years since, Andrew's efforts have resulted in him meeting his second wife Cathy and the couple doing a lot of good for others, together enabling thousands of people to make new friends and enjoy a great social life.
Thankfully, although he still suffers, Andrew's health is by and large mostly better than it once was, and he has learned to live manage it as best he can. Andrew now uses much of his spare time outside work to advise and help others more recently diagnosed with M.E.