My heartfelt wish is that people with power will support research into biomedical causes of ME.
This is MeFreeforAll's response to the NICE trial and the Gibson Parliamentary Enquiry.
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We need more M.E. research
Most sufferers with M.E. (Myalgic Encephalomyelitis) would not be able to lift the 269-page draft consultation document produced by the National Institute of Health and Clinical Excellence (NICE) let alone concentrate sufficiently to appraise its contents.
And then, just like London buses, along came another report from a Parliamentary inquiry, chaired by Norwich MP Dr Ian Gibson.
The NICE draft proposals have been comprehensively condemned by every M.E. group. The principal criticisms include an over-emphasis on psychological factors and lack of recognition of a neurological cause. The Gibson inquiry is to be welcomed because it seems to put a call for more funding for biomedical research and for establishing specialist treatment services around the UK in the correct order; that is, research first, then treatment based upon its findings.
But it looks as though the treatment-before-cause model approved by NICE will go ahead despite lack of patient approval or scientific endorsement.
In addition to the experience of M.E. sufferers, who took the advice of well-meaning GPs to exercise and ended up in wheelchairs, a study by the 25% Group, which represents severely affected people with M.E., showed that 84% were worse after such regimes.
Nor, where they are already in existence, have the specialist clinics done much to justify receiving money to maintain them as they are. The experimental methods are riddled with flaws; the diagnostic terms are ill-defined and bundled together, making generalisation impossible; treatment combinations are not consistent, there are hidden, unreported, statistics; and some patients are pushed beyond their limits - and there are even allegations of bullying.
Far from agreeing that cognitive behaviour therapy and graded exercise should be the treatment of choice for M.E. sufferers, ME Free For All.org suggests that it would be better to have no treatment at all than one that may do you no good or, worse, one which may be harmful.
For these reasons, ME Free for All.org is not the only ME charity which recommends that these services, in their present from, are suspended pending further biomedical research, in order to seek a definitive diagnostic test which may in turn suggest treatment towards a cure. Only after this would we welcome specialist safe and effective treatments for people with ME.
Dr John H Greensmith,
MEfreeforall.org , Bristol.
Sunday, December 31, 2006
Saturday, December 30, 2006
Very Dicey, this Police State
The government is aiming to get more people off sickness benefits. Fair enough. But they really SHOULD be fair.
I know nobody who has received sickness benefits without a heck of a fight. It is usually granted after going to Appeal Tribunal, which shows that the original decision not to award Benefits was wrong in the first place. I know several people who have found the fight for subsistence level benefits took too much toll on their fragile health so they gave up asking for it and depended on family and friends. Other people, too ill to fight for benefits and too sick to work, have committed suicide.
Others are awarded Benefits on an "indefinite basis" only to have them cut unexpectedly, and the first they know about it is when they ask their Carers to draw some shopping money only to find the bank account empty.
I have a friend in her 50s. All her adult life she worked as a Nursing Sister but she had to leave when she developed Multiple Sclerosis. She had Benefits because she cannot walk or focus her eyes to read, she is incontinent, she can't cook or bath herself and has trouble swallowing so she can't eat very much at all.
Last October, her Benefits were cut off. The DWP said in their opinion she could work and did not need a Carer or an electric wheelchair etc etc. When her Incapacity Benefits stopped, it had a knock-on effect so her Housing Benefit and Council Tax Benefit were stopped too, so her Landlord wasn't getting his rent money.
The last time I saw her, with her Carer, she said (indistinctly because her speech is affected) that she had asked the Carer to start packing up her flat because she was going to be evicted soon.
It is evil and wicked that such a terribly ill person who worked hard for years should be treated like this. She is one of those who says she has not got the strength to go to an Appeal Tribunal. Why on earth would the DWP make a decision like that? Have they found a cure for MS that none of us knows about? As far as I know, MS is either in remission or actively causing a marked deterioration in function. It never gets better. This woman can't dress herself or go to the toilet on her own. Just WHAT exactly is it that they are hoping she is going to do?
Personally, I believe she will commit suicide before facing a winter homeless on the streets. Well, I suppose that is ONE way of reducing the Benefits Bill. How vicious, thoughtless and cruel!! As well as unfair and undeserved!!
I get very fed up with the constant barrage of media articles depicting people on sickness benefits as lazy frauds trying to rob the taxpayer in cahoots with crooked doctors. Furthermore, how can an Employment Adviser with no medical background and not in possession of the full facts possibly make decisions about work, training etc?
Is there no reason or sanity left in society?
I know nobody who has received sickness benefits without a heck of a fight. It is usually granted after going to Appeal Tribunal, which shows that the original decision not to award Benefits was wrong in the first place. I know several people who have found the fight for subsistence level benefits took too much toll on their fragile health so they gave up asking for it and depended on family and friends. Other people, too ill to fight for benefits and too sick to work, have committed suicide.
Others are awarded Benefits on an "indefinite basis" only to have them cut unexpectedly, and the first they know about it is when they ask their Carers to draw some shopping money only to find the bank account empty.
I have a friend in her 50s. All her adult life she worked as a Nursing Sister but she had to leave when she developed Multiple Sclerosis. She had Benefits because she cannot walk or focus her eyes to read, she is incontinent, she can't cook or bath herself and has trouble swallowing so she can't eat very much at all.
Last October, her Benefits were cut off. The DWP said in their opinion she could work and did not need a Carer or an electric wheelchair etc etc. When her Incapacity Benefits stopped, it had a knock-on effect so her Housing Benefit and Council Tax Benefit were stopped too, so her Landlord wasn't getting his rent money.
The last time I saw her, with her Carer, she said (indistinctly because her speech is affected) that she had asked the Carer to start packing up her flat because she was going to be evicted soon.
It is evil and wicked that such a terribly ill person who worked hard for years should be treated like this. She is one of those who says she has not got the strength to go to an Appeal Tribunal. Why on earth would the DWP make a decision like that? Have they found a cure for MS that none of us knows about? As far as I know, MS is either in remission or actively causing a marked deterioration in function. It never gets better. This woman can't dress herself or go to the toilet on her own. Just WHAT exactly is it that they are hoping she is going to do?
Personally, I believe she will commit suicide before facing a winter homeless on the streets. Well, I suppose that is ONE way of reducing the Benefits Bill. How vicious, thoughtless and cruel!! As well as unfair and undeserved!!
I get very fed up with the constant barrage of media articles depicting people on sickness benefits as lazy frauds trying to rob the taxpayer in cahoots with crooked doctors. Furthermore, how can an Employment Adviser with no medical background and not in possession of the full facts possibly make decisions about work, training etc?
Is there no reason or sanity left in society?
Named and Shamed - read and tremble!
Doctors who sign too many people off sick or who support too many Incapacity Benefit claims are to be "named and shamed" as part of a new Benefit Fraud crackdown. What cheerful news! Anyway, here are a few places you can read the story.
http://comment.independent.co.uk/columnists_m_z/deborah_orr/article327287.ece
(snippet)
Blair demanded incapacity benefit payments be cut to the bone, that employers should be given the right of appeal against an employee who was signed off as sick by a doctor, and that doctors writing many such notes should be audited and named and shamed as if they deserved to be put in the 21st-century stocks. He requested, too, the stepping up of means- testing for the better-off disabled, and that those on benefits should be paid partly in vouchers, redeemable only against job-training schemes.
http://www.people.co.uk/news/tm_headline=sick-joke-&method=full&objectid=18322514&siteid=93463-name_page.html
(snippet)
DODGY doctors who hand out too many sick-notes are to be named and shamed in an official crackdown.
Sickies currently cost British industry a staggering £13 billion A YEAR.
And in a bid to plug the drain, Work and Pensions Secretary John Hutton is planning to draw up a league table of GPs who sign off the most patients.
The worst offenders will then be investigated over the way they dole out the certificates.
And government snoops - known as "employment advisers" - will patrol surgeries looking for patients who have been allowed to swing the lead too easily.
A top Whitehall source said: "We need incentives to encourage GPs to get their patients back to work."
http://www.sundaymirror.co.uk/news/tm_headline=exclusive--gps-told-cut-sick-notes%26method=full%26objectid=18322057%26siteid=62484-name_page.html
(snippet)
DOCTORS who dish out too many sick notes face being named and shamed under a new government plan.
Work and Pensions Secretary John Hutton is considering a "league of shame" which would infuriate medics. The clampdown follows research which shows some doctors issue more sick notes than others.
The move is aimed at slashing the annual payment of £13billion in sickness benefits to 2.7 million people. Ministers hope it will help cut the number of people on incapacity benefit by one million within 10 years.
A source close to Mr Hutton said: "We want the medical profession to take on much more of a role in helping get people back to work.
"The message is, 'Work is good for you'. It can help reduce the feelings of depression which many people on sickness benefit suffer from."
Doctors who sign the most sick notes would be named and then face a possible inquiry.
But critics fear ministers will use the shake-up to force thousands of sick people back to work. People claiming incapacity benefit receive from £59.20 to £70.05 - rising to £78.50 a week if they're ill for a long time.
Ministers plan to replace the benefit with a new Employment and Support Allowance by 2008. Claimants - except the most severely disabled - would have to attend "work-focused" interviews or risk having their benefits cut.
http://comment.independent.co.uk/columnists_m_z/deborah_orr/article327287.ece
(snippet)
Blair demanded incapacity benefit payments be cut to the bone, that employers should be given the right of appeal against an employee who was signed off as sick by a doctor, and that doctors writing many such notes should be audited and named and shamed as if they deserved to be put in the 21st-century stocks. He requested, too, the stepping up of means- testing for the better-off disabled, and that those on benefits should be paid partly in vouchers, redeemable only against job-training schemes.
http://www.people.co.uk/news/tm_headline=sick-joke-&method=full&objectid=18322514&siteid=93463-name_page.html
(snippet)
DODGY doctors who hand out too many sick-notes are to be named and shamed in an official crackdown.
Sickies currently cost British industry a staggering £13 billion A YEAR.
And in a bid to plug the drain, Work and Pensions Secretary John Hutton is planning to draw up a league table of GPs who sign off the most patients.
The worst offenders will then be investigated over the way they dole out the certificates.
And government snoops - known as "employment advisers" - will patrol surgeries looking for patients who have been allowed to swing the lead too easily.
A top Whitehall source said: "We need incentives to encourage GPs to get their patients back to work."
http://www.sundaymirror.co.uk/news/tm_headline=exclusive--gps-told-cut-sick-notes%26method=full%26objectid=18322057%26siteid=62484-name_page.html
(snippet)
DOCTORS who dish out too many sick notes face being named and shamed under a new government plan.
Work and Pensions Secretary John Hutton is considering a "league of shame" which would infuriate medics. The clampdown follows research which shows some doctors issue more sick notes than others.
The move is aimed at slashing the annual payment of £13billion in sickness benefits to 2.7 million people. Ministers hope it will help cut the number of people on incapacity benefit by one million within 10 years.
A source close to Mr Hutton said: "We want the medical profession to take on much more of a role in helping get people back to work.
"The message is, 'Work is good for you'. It can help reduce the feelings of depression which many people on sickness benefit suffer from."
Doctors who sign the most sick notes would be named and then face a possible inquiry.
But critics fear ministers will use the shake-up to force thousands of sick people back to work. People claiming incapacity benefit receive from £59.20 to £70.05 - rising to £78.50 a week if they're ill for a long time.
Ministers plan to replace the benefit with a new Employment and Support Allowance by 2008. Claimants - except the most severely disabled - would have to attend "work-focused" interviews or risk having their benefits cut.
Tuesday, December 26, 2006
Derbyshire Telegraph Lightning Article
Here is Sue Waddle's response to the same article Dr Greensmith responded to, below.
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APPROACH IS TOO SIMPLISTIC
22 December 2006
I Am so pleased that Jennifer Tonks is now fit and well from whatever she
had, but it certainly was not Myalgic Encephalomyelitis (M.E.)
M.E. is a serious neurological illness which affects all major body systems,
including cardio-vascular.
If the Lightning Therapy is so amazing then it should also be able to "cure"
Parkinson's, M.S., Motor Neurone Disease and a host of other neurological
illnesses.
It cannot, and it is dangerous and misleading to say that patients with M.E.
can be cured in this way.
If the 250,000 sufferers in the UK could be cured so simply, then it would
be immoral and money-wasting for the Department of Health not to offer this
"treatment". If only it were that simple.
This does, however, sound like an interesting approach for depression and
fatigue.
People die with M.E. and this approach is far too simplistic.
Sue Waddle
Portsmouth.
PERMISSION TO FORWARD, REPOST & USE IN NEWSLETTERS.
APPROACH IS TOO SIMPLISTIC
22 December 2006
I Am so pleased that Jennifer Tonks is now fit and well from whatever she
had, but it certainly was not Myalgic Encephalomyelitis (M.E.)
M.E. is a serious neurological illness which affects all major body systems,
including cardio-vascular.
If the Lightning Therapy is so amazing then it should also be able to "cure"
Parkinson's, M.S., Motor Neurone Disease and a host of other neurological
illnesses.
It cannot, and it is dangerous and misleading to say that patients with M.E.
can be cured in this way.
If the 250,000 sufferers in the UK could be cured so simply, then it would
be immoral and money-wasting for the Department of Health not to offer this
"treatment". If only it were that simple.
This does, however, sound like an interesting approach for depression and
fatigue.
People die with M.E. and this approach is far too simplistic.
Sue Waddle
Portsmouth.
Lightning Therapy gives False Hope
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Letter by Dr John Greensmith in response to an article on Lightning Therapy 'curing' a girl with ME in the Derby Telegraph. See http://tinyurl.com/ymzd68
FALSE HOPES ON 'LIGHTNING'
22 December 2006
I Am sure that Jennifer Tonks was genuinely ill (Evening Telegraph, December 12) and I'm very pleased for her sake that she is now so well and I hope her recovery lasts.
But I very much doubt that it was the Lightning Process that cured her illness, whether her diagnosis of M.E. (Myalgic Encephalomyelitis) was correct or not.
If the Lightning Process worked, do you think we would still have upwards of 120,000 M.E. sufferers, maybe 240,000 if you count all Chronic Fatigue Syndrome patients?
I fear that stories like Jennifer's may raise false hopes and only succeed in lightening wallets.
Dr John H. Greensmith
ME Free For All
Bristol.
Letter by Dr John Greensmith in response to an article on Lightning Therapy 'curing' a girl with ME in the Derby Telegraph. See http://tinyurl.com/ymzd68
FALSE HOPES ON 'LIGHTNING'
22 December 2006
I Am sure that Jennifer Tonks was genuinely ill (Evening Telegraph, December 12) and I'm very pleased for her sake that she is now so well and I hope her recovery lasts.
But I very much doubt that it was the Lightning Process that cured her illness, whether her diagnosis of M.E. (Myalgic Encephalomyelitis) was correct or not.
If the Lightning Process worked, do you think we would still have upwards of 120,000 M.E. sufferers, maybe 240,000 if you count all Chronic Fatigue Syndrome patients?
I fear that stories like Jennifer's may raise false hopes and only succeed in lightening wallets.
Dr John H. Greensmith
ME Free For All
Bristol.
Getting ready to go home
Sean just checked that the trolley was sturdy enough before they left.
When everyone had gone, Michelle and I watched Doc Martin on TV. We have decided to have a Duvet and DVD Day tomorrow,
We all wish all our Family and Friends a very happy season of Advent and hopethe New Year brings many blessings to all. God Bless us Every One as Tiny Tim would say.
Wendy and the Brick Trolley
Sean gave Wendy Anselm and Marie's old brick trolley and she really took to it.
Monday, December 25, 2006
Woozle got stuck in
Woozle got stuck in to everything within reach. She emptied the biscuits on the floor several times but she was having so much fun we decided to let her enjoy it.
Smokers Corner
The only place I allow smoking is in the kitchen, but with so much cooking going on I didn't want my kitchen hijacked when I needed to be in there but everyone was very good and were perfectly happy to be kicked out of there when necessary.
And look at Fat Father Jack enjoying his Christmas dinner. The animals had leftover lamb and beef, and Brakkie was given the lamb bone, which he is chewing on hours later.
Wendy slept through most of it
Wendy slept through most of it as she still isn't very well. She had a chesty cough, poor little scrap.
Watching the Queen's Speech
After a great lunch, we opened presents and then watched the Queen's Speech. And look at the mess! Everyone was sweet though and helped clear up before they left.
Nigel
Nigel made us laugh when he said that what he was thankful for was not having to be sent to Tesco at 3am to get avocado pears for a pregnant wife!
Our Guest
These photos show Michelle and Caelyn with our Christmas guest, Steve. He is a workmate of Michelle's and it was great to have him - he fitted right in and he was very sweet. He also did the washing up which was incredibly kind of him. watch out, Steve! We will probably invite you again next year, so consider this advance warning LOL.
My girls
Kate had a nice new Dorothy Perkins top and Michelle looked lovely too. Her weight loss shows. She had an idea which we are going to adopt as a new Christmas tradition. She suggested we go round in a circle saying what we are especially thankful for. It was a really nice idea.
Party livened up
The party livened up when Sean arrived. It was soooo good to see him. But he was having an allergy attack and didn't want to take an antihistamine as he was worried it would make him too drowsy to drive back to Tonbridge safely.
That poor dog!
Michelle had a brainwave and bought Brakkie an Angel outfit. Needless to say he didn't even have it on for 5 seconds! He hated it. Quite right too - that dog is no Angel, and you would know that if you ever stood downwind of him when his digestion has been a little taxed.
Sunday, December 24, 2006
After all that
After all that, Woozle had a much needed bath. Shortly after that Caelyn and Nigel went home as Caelyn needs an early night. Also, Wendy is still a bit chesty so they want her to rest a bit too, although she was very good for hours here. She hardly ever cries except when something really is wrong as she has a sunny temperament.
Work Party
Caelyn and Nigel came to help prepare for Christmas and it was such a relief because my ME has been playing up for several days and I couldn't see how I was going to get everything done. Michelle wasn't up to helping much either.
Between us, we
cooked and carved two lots of meat and put them in pyrex dishes for reheating tomorrow
prepared the vegetables
cleared the kitchen
cleaned and tidied the house
got the drinks out
cut up the Christmas cake and wrapped it in clingfilm
got the plates, knives, forks and glasses out
prepared snacks
bathed Woozle
did some laundry
did a last minute dash to Tesco.
took the dog out and cleaned up after him
cleaned the cats litterbox
washed the kitchen floor
cleaned the bathroom
bagged up the rubbish
It was a great deal of work and I'm planning an early night so as to be able to cope tomorrow. I hope Michelle cheers up by then as she is rather grumpy at the moment and one grumpy person casts a pall on the whole atmosphere.
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