THE NICEGUIDELINES BLOG

Thank you for your post.

2012-05-23T12:20:27.671-07:00

Thank you for your post.

2012-05-23T12:19:50.379-07:00

This comment has been removed by the author.

I have to say "Anonymous" is right - and...

2012-05-23T09:11:16.504-07:00

I have to say "Anonymous" is right - and the Sophia Mirza case is being used - unwisely I believe - by ME activists. Their motives are good, but that doesn't alter the fact they are misrepresenting the case.

Sophia may have suffered from ME?CFS, but that's not what killed her. She died from acute renal failure due to dehydration. ME is only listed as a contributing factor in her supposed 'inability' to drink.

It may not be popular to say this - but if Sophia's mother had called a doctor or had her put on a drip she would not have died. The mother's reasons may or may not have made sense, but nonetheless it was her decision to do nothing that led to her daughter dying of dehydration.

You're taking the quotation on p18 out of cont...

2012-05-21T22:26:40.254-07:00

You're taking the quotation on p18 out of context. The author is offering that as an example of badly done therapy. You act like that's the view of the paper.

Very Good Blog, Really we got good Information
2012-05-18T02:32:04.762-07:00
Very Good Blog, Really we got good Information

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Delighted to see you again well enough to post thi...

2012-05-11T04:58:44.866-07:00

Delighted to see you again well enough to post this relevant article, Dr Speedy.

Let's all leave comments on this article. I h...

2012-05-08T13:39:06.585-07:00

Let's all leave comments on this article.

I had a software issue, will keep trying.

Thank you to all the advocates who educated her.

Very true.Such a nice concept. Your information is...

2012-04-28T06:15:34.440-07:00

Very true.Such a nice concept. Your information is true up to great most of the extent. Thanks for sharing.Thanks for the useful information.Such a inspirable and good post . I am able to get new knowledge while reading this . Keep sharing this type of informative posts.

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What youre saying is completely true. I know that ...

2012-04-21T00:53:18.071-07:00

What youre saying is completely true. I know that everybody must say the same thing, but I just think that you put it in a way that everyone can understand. I also love the images you put in here. They fit so well with what youre trying to say. Im sure youll reach so many people with what youve got to say.Ross Finesmith

What youre saying is completely true. I know that ...

2012-04-21T00:50:54.569-07:00

Miss you, Dr. Speedy, Hope to see you better soon,...

2012-04-18T12:43:44.281-07:00

Miss you, Dr. Speedy, Hope to see you better soon, love,

Have missed your blogs the past few weeks Hope you...

2012-04-18T12:42:26.094-07:00

Have missed your blogs the past few weeks
Hope you are managing this difficult disease as well as possible. We look forward to interesting and informative news and comments from you when you can.. until then do take great care of yourself with our love.

I so agree with all you wrote. Bravo!!! Thank yo...

2012-04-15T18:41:43.767-07:00

I so agree with all you wrote. Bravo!!! Thank you. I cannot tell you how upset I am and have been with the CFS name. After 37 years of this horrid nightmare, I cannot believe we're still fighting the basics we were engaged in ages ago.

I finally started a blog 7 weeks ago and addressed one of the issues, so-called "CFS specialists" and how those things go, indirectly, in a post. Make no mistake...in some cases I've had incredibly great care. But I saw one rather famous name and I am STILL, three years later, wonder what HE was about and am upset because if he treated me, a person very familiar with all the symptoms, having incredible testing over the decades, etc, and still "mistreated," I wonder what he is doing to those new to this nightmare!
http://laughingfrommysickbed.blogspot.com/2012/04/you-never-have-second-chance-to-make.html
Whether anyone reads my post remains beyond my care for the most part, as long as people get the message you just so eloquently put it. Thank you!
(And sorry I put the CFS/ME labels in my posts: it is like pouring salt on a wound each time I do so.)

Thanks Dr Speedy for keeping us informed about ME....

2012-04-04T05:26:05.220-07:00

Thanks Dr Speedy for keeping us informed about ME. It helps with the isolation from the world beyond our bedrooms which the disease imposes. The bad news is too frequent, and the deaths of our fellow patients make us miserable. The good news is that at least the media is reporting and allowing our healthier fellows to disuss our ghastly position.

Why do NHS hospitals continue to discharge M.E. pa...

2012-03-31T11:45:13.380-07:00

Why do NHS hospitals continue to discharge M.E. patients when they are still clearly very ill. I have been discharged because my consultant said that he can do nothing more for me!! So just because he can't offer me treatment - which he admits himself is due to NHS restrictions - he has discharged me - an ill 37 year old woman who has 3 young children to look after and cannot work because M.E. took away my successful teaching career. STOP IGNORING US - WE MIGHT GO AWAY BUT OUR ILL HEALTH DOESN'T - WE ARE DYING AND YOU ARE IGNORING US. This breaches the first rule of being a doctor - putting the patient first and DOING NO HARM!!

This photo should be published on the front page o...

2012-03-31T11:34:37.911-07:00

This photo should be published on the front page of every major newspaper in the UK. I think that if the majority of the public knew the real truth about this illness, they would be sympathetic. The media are to blame for perpetuating the inaccuracies surrounding this illness. Before I developed M.E. myself, I believed it was an illness for weak, feeble-minded people with depressive tendencies. Why did I think this? It was the only message I'd ever received about the illness. If I'd have known the truth about it, I would have been hugely sympathetic to its sufferers.
It's time to make amends - the media has to be at the forefront of it. They need to make up for the damage they have caused but of course for many M.E. sufferers it's too little too late.
As for the psychiatric brigade, they should lose their licences to practice. Such incompetence should never be forgiven. The same goes for all of the GP's and Consultants who have been so dismissive of us - supposedly intelligent people being so incredibly short-sighted. Any doctor who can miss an illness as serious as M.E. is basically not fit to practice.
It's time everyone saw the truth and it's time that some people hung their heads in shame. My motto is 'truth will out' and it will but it's too late for many and we will never forget them, ever xx

Dr Derek Enlander of the New York ME/CFS Clinic in...

2012-03-29T11:58:34.755-07:00

Dr Derek Enlander of the New York ME/CFS Clinic in New York is part of the Hemispherx Ampligen Study and has recruited patients from the local New York Metropolitan area and as far away as Hong Kong.

As Well as Ampligen the Clinic has a GcMaf study for ME/CFS treatment

My sincerest sympathies on the death of your siste...

2012-03-29T10:26:14.843-07:00

My sincerest sympathies on the death of your sister. And, sympathy for all the suffering she had to endure along with medical abuse. I also have ME but not nearly as bad as your sister. I also, didn't ''believe in'' in CFS/ME much myself until I had shingles and simply didn't get better, although the rash went away. I am lucky to have a pretty understanding MD & Infectious Disease Specialist. I live in the US. I will watch the video you recommend. Take care.

This blog has been taken down already. The BPS pol...

2012-03-05T12:58:08.021-08:00

This blog has been taken down already.
The BPS police are getting everywhere.

There are also different definitions of CFS. The O...

2012-03-03T05:20:53.947-08:00

There are also different definitions of CFS.
The Original one of which there was Never any proper research done and these very ill people were just slapped with the insulting diagnosis of CFSyndrome which was meant to be a "name place-holder" ONLY, until the Proper research could be done..

But then the CDC never did any..

They eventually went on to ReDefine CFS "watering it down" full of psych stuff like you see today and everyone is using THIS definition NOW and STILL ignoring the Original Cohort that is STILL Very sick if they are even alive.. many are dead already...
So Please make SURE you know of which CFS definition you speak before you start throughing names around. In this case "names Matter" they can and have KILLed people..

my comment was taken down on the article so I will...

2012-03-02T03:57:32.731-08:00

my comment was taken down on the article so I will post it here. I have also reposted it on the papers comments.

Tuesday, February 28 2012, 11:29AM

“Lois didn't have Anorexia. She had ME or a similar Illness. I have had ME now for 24 years no help from social services or Hospital.They had evicted me I was ill according to them because I had not had a baby. My husband had to prop me up and spoon feed me. I loved food but couldn't eat I spent 23 hrs a day laying on a bed feeling poisoned and having difficulty swallowing. how can you eat feeling and being so physically affected like that. yes malnutrition would be the result as with Anorexia but she could have been helped. The Science Media centre ask certain Psychiatrists for their advise when reporting on ME and similar illnesses. this way they can keep the reality and severity of the illness away from the public. It suits the government to portray it this was as it makes it harder to claim benefits.they would rather send out a message that we are scroungers. we so need public help to change this kind of treatment of severely sick people. we cannot do it on our own.”

http://www.investinme.org/Article-050%20Sophia%20W...

2012-03-01T19:32:47.532-08:00

http://www.investinme.org/Article-050%20Sophia%20Wilson%2001-RIP.HTM

The Inquest into the Death of Sophia Mirza

Summary

Today, 13th June 2006, the inquest into the death of Sophia Mirza was held in Brighton Coroners Court, England.

The cause of death was stated as
'The verdict was Acute aneuric renal failure due to dehydration arising as a result of CFS'

Two pathologists could not agree which name to use - CFS, ME or ME/CFS.

In the end it was stated that CFS is a modern word for ME.

This is why CFS was used on the death certificate.

The pathologist also said -
'ME describes inflammation of the spinal chord and muscles. My work supports the inflammation theory. There was inflammation in the basal root ganglia.'

Yeah, well we can argue about names for centuries....

2012-03-01T16:06:07.054-08:00

Yeah, well we can argue about names for centuries. It's CFS on Sophia Mirza's death certificate. Not M.E. http://www.sophiaandme.org.uk/docsindex/212.jpg In Black and White. CFS killed Sophia Mirza. There is no mention of M.E.

As a very severe, acute infectious onset ME patien...

2012-03-01T11:50:58.666-08:00

As a very severe, acute infectious onset ME patient of many decades, I endorse this view. Thank you for posting it Dr Speedy.

Hi, I liked this hark work in this page, you are h...

2012-02-29T07:58:51.465-08:00

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THE NICEGUIDELINES BLOG

Thank you for your post.

I have to say "Anonymous" is right - and...

You're taking the quotation on p18 out of cont...

Very Good Blog, Really we got good Information 2012-05-18T02:32:04.762-07:00 Very Good Blog, Really we got good InformationTerm Papers

Delighted to see you again well enough to post thi...

Let's all leave comments on this article. I h...

Very true.Such a nice concept. Your information is...

What youre saying is completely true. I know that ...

What youre saying is completely true. I know that ...

Miss you, Dr. Speedy, Hope to see you better soon,...

Have missed your blogs the past few weeks Hope you...

I so agree with all you wrote. Bravo!!! Thank yo...

Thanks Dr Speedy for keeping us informed about ME....

Why do NHS hospitals continue to discharge M.E. pa...

This photo should be published on the front page o...

Dr Derek Enlander of the New York ME/CFS Clinic in...

My sincerest sympathies on the death of your siste...

This blog has been taken down already. The BPS pol...

There are also different definitions of CFS. The O...

my comment was taken down on the article so I will...

http://www.investinme.org/Article-050%20Sophia%20W...

Yeah, well we can argue about names for centuries....

As a very severe, acute infectious onset ME patien...

Hi, I liked this hark work in this page, you are h...

Very Good Blog, Really we got good Information
2012-05-18T02:32:04.762-07:00
Very Good Blog, Really we got good Information

Term Papers