Please share the following image on Facebook and / or Twitter to raise a little awareness.
Friday, 11 May 2012
Thursday, 10 May 2012
Just a question
Do you have M.E.?
I would be interested to hear any points of view on this.
If so, how would you feel if the person you love tells you that if you relapse, or develope severe M.E., becoming bed bound, that they would not be able to be there for you?
I would be interested to hear any points of view on this.
Sleepy dust
One of my friends posted this video on Facebook. I don't dare post it myself, as posting things about M.E. / CFS leads to heartache and disapointment. The only people who give a damn are others who have M.E. or CFS. Even friends who only have Fibro pooh pooh M.E.. It hurts deep deep inside. So, here is a video that one of my friends was brave enough to share. It is nine minutes long, and quite slow, so please be patient with it. It is fairly straight forward.
Here is the sleepy dust website. I have not visited myself yet so cannot vouch for it.
Wednesday, 9 May 2012
Letter to non sufferers
I would like to share with you a poem written by The Morbid One. She likens M.E. to living with an abusive partner. I've had this tab open for weeks, because I knew I wanted to share it, but every time I read it I burst into tears (due to everything I recently went through). It's an amazing poem, and I do hope it helps others to understand, as it is so true.
He tells me what I spend my day doing.
He makes me cancel on friends, and cancel appointments.
He decides whether I can read a book, or listen to music.
He gives me false hope; lets me think that I can achieve an unprecedented step forward, then pulls me back down to his level.
He tells me what I can eat and drink.
He’s indecisive, sometimes he lets me do something then changes his mind midway.
He plays tricks on me, and punishes me when I read his mood incorrectly.
He makes me feel sick in the same day that he let me be happy.
He makes me feel weak when inside I know I’m strong.
He controls how long I sleep, or if I’m allowed to sleep at all.
He makes me feel pain for no reason.
He makes me afraid of what will happen if I defy him.
He knows I dream of leaving him, and reminds me that I’m foolish for doing so.
All in the mind? Why critics are wrong to deny the existence of chronic fatigue
Breaking the myths about M.E.. Taken from Sonia Poulton's article in The Daily Mail.
Myth No. 1: ME is a mental illness
Not so. It is a neurological one. It is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is. Psychiatrists have bagged it as 'their thing' and the General Medical Council has been somewhat remiss in suporting it as a physical condition.
I spoke with one ME sufferer, who asked to remain anonymous for fear of upsetting the medical professionals who are currently treating her. She said a new GP at her practice had suggested she take up meditation to help her combat her decades-old condition.
Thankfully there are some doctors, few and far between admittedly, who really understand the physical nature of M.E.
M.E. is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is
M.E. is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is
Dr. Speight, a medical advisor for a number of M.E. charities does. Commenting on the wide-ranging debilitation of the illness, he has said:
'The condition itself covers a wide spectrum of severity but even the mildest cases deserve diagnosis and recognition because if they are given the wrong advice or don't handle themselves correctly they can become worse.
'At the more severe end of the spectrum there's a minority of patients who are truly in a pitiable state...some of them in hospitals, some of them at home...and this end of the spectrum is really one of the most powerful proofs to me of what a real condition this is and how it cannot be explained away by psychiatric reasons.'
M.E. sufferers are subject to a battery of controversial fit-to-work assessments
M.E. sufferers are subject to a battery of controversial fit-to-work assessments
Sadly, there are still many health professionals who buy into the notion that M.E. is a psychological disorder and should be treated as a form of insanity.
In Denmark, only last week, The Danish Board of Health sought to remove a 23-year old woman, Karina, from her family home on the grounds of mental illness despite the fact that what she really has is M.E.
Karina, bed-bound, light and sound sensitive and too weak to walk is considered to be insane, rather than physically sick, and her family has been repeatedly told by Danish doctors that the diagnosis of M.E. is not recognised.
Myth 2: ME is just extreme tiredness, right?
Wrong. Despite falling under the Chronic Fatigue Syndrome category - as does Fibromylgia which has its own Awareness Day next week - it is entirely wrong to assume that M.E. is merely about lack of energy.
This confusion arose over the past 20-odd years and is due to the condition being re-classified as a Fatigue Syndrome.
The result of this has been to trivialise the illness which has served as fodder for ill-informed public commentators who have used M.E. and Fibromylgia to talk about 'scroungers' in the benefits system who are 'too lazy' to get out of bed.
For those who know about the illness, this type of commentary is viewed as dangerous rhetoric that deserves to be classified as a form of hate crime.
Myth No. 3: M.E. is just like a bad flu
Oh, if only. M.E. is a complex, chronic, multi-system illness that affect the body in similar ways to Multiple Scelerosis. In addition, inflammation of the neurological system can lead to heart disease, extreme muscle pain and other debilitating and life-threatening conditions.
As one doctor put it, comparing M.E. to an illness like flu is like comparing Emphysema to a chest infection. It seriously undermines the truth extent of M.E.
Myth No. 4: M.E. sufferers should just 'pull themselves together'
Many sufferers have found themselves abandoned by health professionals, struck off of registers and even rejected by their own families when they have failed to respond to 'tough love'.
Too many people assume that M.E. can be overcome with the right mental attitude. This consequently leaves M.E. sufferers even more vulnerable to issues like depression as they are further isolated.
M.E. is not a case of the mind being able to heal itself with determination.
M.E. breaks the body down and that also includes the brain.
Myth No. 5: Only adults have M.E.
Children have M.E. and their childhoods are destroyed as a consequence.
Margaret Rumney of Allendale, Northumberland.watched as her 11-year-old daughter, Emma, was reduced to a shell of her former self when she was struck down with M.E. nine years ago.
"Since then it has been a continual rollercoaster of emotions and has been one fight after the other," says Margaret. "It is very hard for my daughter being ill, she is virtually housebound, often reliant on a wheelchair, and to have to cope with disbelief and ridicule on top of this makes this illness even harder to bear.
"Our experience of my daughter's school was an awful one. When my daughter was receiving home tuition organised officially by the Education Welfare Officer we were threatened by one professional that if my daughter didn't return to school that it would be classed as a psychological issue and social services would get involved."
It is a misconception that children are in some way immune to M.E. It often begins following a bout of illness such as measles
It is a misconception that children are in some way immune to M.E. It often begins following a bout of illness such as measles
Threats and intimidation of this nature at the hands of the authorities are a constant feature of those in the M.E. community, and particularly those caring for children with the illness.
Naturally, this pressure merely adds to the overall anxiety that sufferers are already experiencing. Education is key. Bullying is not.
Myth No. 6 - You can 'catch' M.E.
A hotly contested issue. Data suggests it's possible but the true cause is still subject to much debate among the more knowing professionals. What appears clear, however, is that ME seems to follow on from various viral infections, including meningitis. More research is needed.
Myth No. 7: Real M.E. sufferers are few and far between
There are currently 250,000 recognised cases of ME in the UK. That's 1 in 250 so that's hardly an insignificant number, is it?
Myth No. 8: Only severe cases of M.E. are worth acknowledging
Terrible misconception. M.E. ruins people's lives even if the patient is not entirely bedbound.
The media tend to concentrate on the worst case scenarios but this does not help the full situation as it leaves others, who are still able to move at times, with the stigmatisation of 'not being ill enough'.
Claire Taylor-Jones, a mother of one from Rhyl in North Wales, has been unable to pursue her ambition of becoming a solicitor after she was diagnosed with M.E.
Pull yourself together: Too many people assume that M.E. can be overcome with the right mental attitude
Pull yourself together: Too many people assume that M.E. can be overcome with the right mental attitude
In common with other sufferers, Claire has good days and bad days but she is not consistently well enough to pursue her goals and she is left in a type of limbo land. Her plans are on hold.
Myth No. 9: Children with M.E. have neglectful parents
There's the notion that children with M.E. are actually victims of mothers who have Munchausens by Proxy – the illness where parents act as if the child is sick to further their own need for attention.
This is a particularly dangerous belief system as it leaves the true M.E. sufferer without sufficient support and diagnosis and the carer is treated as the problem.
Myth No. 10: Physical exercise will benefit M.E. sufferers
Absolutely not true. Worse, still, enforced 'graded exercise' can escalate the condition to dangerous and irreparable levels for the patient.
During the research of this subject, I have watched footage of hospital physiotherapists literally bullying M.E. patients to stand and walk. It is pitiful to witness.
The physios say things like 'Come on, you can do it. You just have to put your mind to it' and, at worst, 'You're not trying hard enough.'
Julie-Anne Pickles, who has had M.E. for the past seven years has experienced a serious deterioration in her condition as a consequence of wrong diagnosis and ineffective medical response. She is now 90 per cent bedbound and has been diagnosed with depression, diabetes and Angina.
She told me:
"Cardiology phoned me with an appointment the other day and they told me to wear trainers because they want me running on a treadmill while on an ECG! I said: 'You do know I have M.E.?' They said they did but not to worry as I won't be running for more than five minutes! Running? I crawled on my hands and knees to the loo this morning!"
This idea among some of the medical professional that enforced exercise will help the condition of a M.E. belongs to a darker time in our history. A period when we thought that autistic children were a result of being born to cold and detached women or 'refrigerator mums' as they were heinously and immorally labelled.
Myth No. 11 - M.E. is not life-threatening
It is, although the true mortality rate of M.E. is mired in great confusion.
Recently, Labour MP George Howarth asked Paul Burstow, Minister of State for Care Services, to supply details of deaths to arise from M.E. Mr. Burstow replied that 'this information is not available and is not collected centrally'.
As with so many issues regarding our sick and disabled, the Coalition had this wrong, too.
According to figures obtained from the Office of National Statistics, there have been five deaths listed as the cause of M.E. in recent years.
For campaigners this is nothing less than a fudge of the true scale.
Figures are easy to massage with M.E. because it triggers so many other illnesses, such as heart disease. Given that many health professional still deny that M.E. is a physical condition, they are unable to list it as a cause of death even if it is.
Myth No. 12: M.E. is an excuse not to work
Despite recognition from the World Health Organisation in 1969 that M.E. is a neurological disorder, many Governments - including our present Coalition - have chosen to ignore this.
Consequently, M.E. sufferers are subject to a battery of controversial fit-to-work assessments. The anxiety and physical exertion this requires generally worsens the condition.
When the M.E. sufferer is unable to work, because of their illness, they are removed from disability benefit and are plunged into poverty.
Not so. It is a neurological one. It is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is. Psychiatrists have bagged it as 'their thing' and the General Medical Council has been somewhat remiss in suporting it as a physical condition.
I spoke with one ME sufferer, who asked to remain anonymous for fear of upsetting the medical professionals who are currently treating her. She said a new GP at her practice had suggested she take up meditation to help her combat her decades-old condition.
Thankfully there are some doctors, few and far between admittedly, who really understand the physical nature of M.E.
M.E. is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is
M.E. is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is
Dr. Speight, a medical advisor for a number of M.E. charities does. Commenting on the wide-ranging debilitation of the illness, he has said:
'The condition itself covers a wide spectrum of severity but even the mildest cases deserve diagnosis and recognition because if they are given the wrong advice or don't handle themselves correctly they can become worse.
'At the more severe end of the spectrum there's a minority of patients who are truly in a pitiable state...some of them in hospitals, some of them at home...and this end of the spectrum is really one of the most powerful proofs to me of what a real condition this is and how it cannot be explained away by psychiatric reasons.'
M.E. sufferers are subject to a battery of controversial fit-to-work assessments
M.E. sufferers are subject to a battery of controversial fit-to-work assessments
Sadly, there are still many health professionals who buy into the notion that M.E. is a psychological disorder and should be treated as a form of insanity.
In Denmark, only last week, The Danish Board of Health sought to remove a 23-year old woman, Karina, from her family home on the grounds of mental illness despite the fact that what she really has is M.E.
Karina, bed-bound, light and sound sensitive and too weak to walk is considered to be insane, rather than physically sick, and her family has been repeatedly told by Danish doctors that the diagnosis of M.E. is not recognised.
Myth 2: ME is just extreme tiredness, right?
Wrong. Despite falling under the Chronic Fatigue Syndrome category - as does Fibromylgia which has its own Awareness Day next week - it is entirely wrong to assume that M.E. is merely about lack of energy.
This confusion arose over the past 20-odd years and is due to the condition being re-classified as a Fatigue Syndrome.
The result of this has been to trivialise the illness which has served as fodder for ill-informed public commentators who have used M.E. and Fibromylgia to talk about 'scroungers' in the benefits system who are 'too lazy' to get out of bed.
For those who know about the illness, this type of commentary is viewed as dangerous rhetoric that deserves to be classified as a form of hate crime.
Myth No. 3: M.E. is just like a bad flu
Oh, if only. M.E. is a complex, chronic, multi-system illness that affect the body in similar ways to Multiple Scelerosis. In addition, inflammation of the neurological system can lead to heart disease, extreme muscle pain and other debilitating and life-threatening conditions.
As one doctor put it, comparing M.E. to an illness like flu is like comparing Emphysema to a chest infection. It seriously undermines the truth extent of M.E.
Myth No. 4: M.E. sufferers should just 'pull themselves together'
Many sufferers have found themselves abandoned by health professionals, struck off of registers and even rejected by their own families when they have failed to respond to 'tough love'.
Too many people assume that M.E. can be overcome with the right mental attitude. This consequently leaves M.E. sufferers even more vulnerable to issues like depression as they are further isolated.
M.E. is not a case of the mind being able to heal itself with determination.
M.E. breaks the body down and that also includes the brain.
Myth No. 5: Only adults have M.E.
Children have M.E. and their childhoods are destroyed as a consequence.
Margaret Rumney of Allendale, Northumberland.watched as her 11-year-old daughter, Emma, was reduced to a shell of her former self when she was struck down with M.E. nine years ago.
"Since then it has been a continual rollercoaster of emotions and has been one fight after the other," says Margaret. "It is very hard for my daughter being ill, she is virtually housebound, often reliant on a wheelchair, and to have to cope with disbelief and ridicule on top of this makes this illness even harder to bear.
"Our experience of my daughter's school was an awful one. When my daughter was receiving home tuition organised officially by the Education Welfare Officer we were threatened by one professional that if my daughter didn't return to school that it would be classed as a psychological issue and social services would get involved."
It is a misconception that children are in some way immune to M.E. It often begins following a bout of illness such as measles
It is a misconception that children are in some way immune to M.E. It often begins following a bout of illness such as measles
Threats and intimidation of this nature at the hands of the authorities are a constant feature of those in the M.E. community, and particularly those caring for children with the illness.
Naturally, this pressure merely adds to the overall anxiety that sufferers are already experiencing. Education is key. Bullying is not.
Myth No. 6 - You can 'catch' M.E.
A hotly contested issue. Data suggests it's possible but the true cause is still subject to much debate among the more knowing professionals. What appears clear, however, is that ME seems to follow on from various viral infections, including meningitis. More research is needed.
Myth No. 7: Real M.E. sufferers are few and far between
There are currently 250,000 recognised cases of ME in the UK. That's 1 in 250 so that's hardly an insignificant number, is it?
Myth No. 8: Only severe cases of M.E. are worth acknowledging
Terrible misconception. M.E. ruins people's lives even if the patient is not entirely bedbound.
The media tend to concentrate on the worst case scenarios but this does not help the full situation as it leaves others, who are still able to move at times, with the stigmatisation of 'not being ill enough'.
Claire Taylor-Jones, a mother of one from Rhyl in North Wales, has been unable to pursue her ambition of becoming a solicitor after she was diagnosed with M.E.
Pull yourself together: Too many people assume that M.E. can be overcome with the right mental attitude
Pull yourself together: Too many people assume that M.E. can be overcome with the right mental attitude
In common with other sufferers, Claire has good days and bad days but she is not consistently well enough to pursue her goals and she is left in a type of limbo land. Her plans are on hold.
Myth No. 9: Children with M.E. have neglectful parents
There's the notion that children with M.E. are actually victims of mothers who have Munchausens by Proxy – the illness where parents act as if the child is sick to further their own need for attention.
This is a particularly dangerous belief system as it leaves the true M.E. sufferer without sufficient support and diagnosis and the carer is treated as the problem.
Myth No. 10: Physical exercise will benefit M.E. sufferers
Absolutely not true. Worse, still, enforced 'graded exercise' can escalate the condition to dangerous and irreparable levels for the patient.
During the research of this subject, I have watched footage of hospital physiotherapists literally bullying M.E. patients to stand and walk. It is pitiful to witness.
The physios say things like 'Come on, you can do it. You just have to put your mind to it' and, at worst, 'You're not trying hard enough.'
Julie-Anne Pickles, who has had M.E. for the past seven years has experienced a serious deterioration in her condition as a consequence of wrong diagnosis and ineffective medical response. She is now 90 per cent bedbound and has been diagnosed with depression, diabetes and Angina.
She told me:
"Cardiology phoned me with an appointment the other day and they told me to wear trainers because they want me running on a treadmill while on an ECG! I said: 'You do know I have M.E.?' They said they did but not to worry as I won't be running for more than five minutes! Running? I crawled on my hands and knees to the loo this morning!"
This idea among some of the medical professional that enforced exercise will help the condition of a M.E. belongs to a darker time in our history. A period when we thought that autistic children were a result of being born to cold and detached women or 'refrigerator mums' as they were heinously and immorally labelled.
Myth No. 11 - M.E. is not life-threatening
It is, although the true mortality rate of M.E. is mired in great confusion.
Recently, Labour MP George Howarth asked Paul Burstow, Minister of State for Care Services, to supply details of deaths to arise from M.E. Mr. Burstow replied that 'this information is not available and is not collected centrally'.
As with so many issues regarding our sick and disabled, the Coalition had this wrong, too.
According to figures obtained from the Office of National Statistics, there have been five deaths listed as the cause of M.E. in recent years.
For campaigners this is nothing less than a fudge of the true scale.
Figures are easy to massage with M.E. because it triggers so many other illnesses, such as heart disease. Given that many health professional still deny that M.E. is a physical condition, they are unable to list it as a cause of death even if it is.
Myth No. 12: M.E. is an excuse not to work
Despite recognition from the World Health Organisation in 1969 that M.E. is a neurological disorder, many Governments - including our present Coalition - have chosen to ignore this.
Consequently, M.E. sufferers are subject to a battery of controversial fit-to-work assessments. The anxiety and physical exertion this requires generally worsens the condition.
When the M.E. sufferer is unable to work, because of their illness, they are removed from disability benefit and are plunged into poverty.
M.E. Awareness Week
Ok, it's M.E. Awareness Week. I may not be able to cope with what has happened to me in my own life, but the least I can do is attempt to create some awareness. I apologise if these posts are badly written (worse than usual that is). I've something akin to brain fog going on at the moment.
I should also add that Blogger.com has switched me to their new system. I have absolutely no idea how to make the blog post title link to the articles I'm writing about anymore, so I'm going to have to sneak links to articles into my posts from now on. Sorry.
Let us start off our awareness with an absolutely fantastic article in ... The Daily Mail. Yes, I know that's a contradiction in terms, but there you go. Sonia Poulton has written an article entitled "All in the mind? Why critics are wrong to deny the existence of chronic fatigue". I'm told that the original title for the article compared M.E. to AIDS, which it still does very briefly at the end. It's not an unusual comparison .... but only between those who do understand M.E.. Those outside seem to respond as if the concept is pure blasphemy. How dare we compare out laziness to one of the world's most devastating diseases?
Well, Sonia's article explains clearly and simply why we dare. She starts off by describing how she had previously held the general tainted view that most people do of M.E.:
"M.E. sufferers are workshy malingerers. They whine, constantly, about feeling tired. They are annoying sympathy seekers.
Damn it. We're all tired. Especially those fools like me who work all hours God Sends (and even some he doesn't) to support the type of people who say they are too tired to work.
Oh, and mostly, importantly, M.E. is 'all in the head' and can be overcome with a bit more determination and a little less of the 'poor me' attitude."
She then goes on to break down the commonly held misconceptions about M.E., listing them as:
1: ME is a mental illness
2: ME is just extreme tiredness, right?
3: M.E. is just like a bad flu
4: M.E. sufferers should just 'pull themselves together'
5: Only adults have M.E.
6: You can 'catch' M.E.
7: Real M.E. sufferers are few and far between
8: Only severe cases of M.E. are worth acknowleding
9: Children with M.E. have neglectful parents
10: Physical exercise will benefit M.E. sufferers
And she's absolutely spot on. These are things that we all hear all of the time. It's so hard to respond when people say these things to us, particularly since usually people aren't really interested, so they turn off as soon as you start to tell them they have a preconception.
The only slight quibble I would have with Sonia's article, is that she has started off by questioning why the records regarding M.E. are locked away for 75 years. It is intriguing, and worrying, but to those who don't know about M.E. and simply do not care, it sounds like conspiracy theory. I've tried discussing it with people myself obviously, and even with other M.E. sufferers I usually receive a blank wall in reference to this subject. I imagine that many readers will get to the part that sounds like conspiracy theory and lose interest in the rest.
However, the important thing is that this is an extremely well written article, and will be extremely useful to quote when I try to explain some facts about M.E. to people.
Wednesday, 2 May 2012
M.E International Awareness Day
Can you guess why I posted that? No? Ok ... well May 12th is ME / CFS International Awareness Day. It is also Fibromyalgia Awareness week in New York from May 9th to 15th, so there will be a lot of promotion and purple ribbons being worn worldwide.
Please, do post the above image on your own blog, or on your Facebook, or link to it from Twitter. It is a convenient time to raise awareness (being Awareness Day and all). If you can find or make a purple ribbon please wear one; when people ask you what it is for you can explain to them about the devastation that M.E. causes to sufferers, and their loved ones and families.
Subscribe to:
Posts (Atom)