The Fight is on...Imperial College XMRV Study

[ANGELONDUTY]

Right on...sparklehorse !
" the truth ..will prevail..........!! "

 

[joyscobby]

In Scotland, correct me if I'm wrong, but they use the canadian guidelines for ME and the NICE guidelines for CFS.

This was is a work in progress as far as I know implimintation was delayed due to swine flu. see

http://www.healthscotland.com/uploads/documents/9715-Report - National Consultation Final.pdf


This is a consultation document about it.

and a blog

http://mecfsinscotland.blogspot.com/2009/12/cpg-on-me-cfs.html

Not in place so do not all rush here. there are still no services as yet but a move in the right direction.

 

[Esther12]

You finally get it, are you new to the debate?

Yup.

I still think I disagree with some of the claims people have made, but it could well be that I'm just not used to the way people with a long history of talking about CFS describe things. I think this is a real problem with our ability to convince others of the problems surrounding CFS: I'll often see comments posted on news sites or blogs which I understand and think are reasonable, but know that to most readers it will sound like a mad conspiracy theory. One of the problems with forums like this is that they can lead groups with very similar beliefs and experiences talking amongst themselves and forgetting that others may approach the topic from very different assumptions.

 

[V99]

Thanks joyscobby, you do know your stuff.

It's great that they recognise ME, shame they use the NICE guidelines for everyone else.

Frankly the situation is a disgrace, without an excuse. Medical people should never be allowed to deem a disease as behavioural without evidence, and then stop all biomedical research.
If this situation had continued in respect to other disease, those patients would also find themselves without treatments, and confined to mental institutions, or worse. It's catch 22.

 

[Tom]

Irn Bru
Made from girders
We have built in rust and are slowly/quickly crumbling.
Need painting every year.
Blue, green or Tartan
DLA
Fill it in as though it was your worst day, put all in on your worst day.

Freedom

 

[V99]

Tom, so true.

With a fluctuating condition, it is how you are at your worst that is important. Just in case anyone is wondering, doing this is not illegal, and nor is it lie in the eyes of the government. (I forget the term I should use.)

 

[flex]

Yup.

I still think I disagree with some of the claims people have made, but it could well be that I'm just not used to the way people with a long history of talking about CFS describe things. .

We are not "making claims". We dont have to quote ourselves like Wessely. This is well published, well referenced, multiple sourced FACT!!

DINNAE make me dee it hen, the pons on the stov an the IRON BRU is BILING!! A CANNAE TALK YA RUND OWNY MIR!!

JOYSCOBBY PLEASE CAN YOU TRANSLATE THE ABOVE

 

[joyscobby]

Changes in Scotland

Movement away from NICE to Canadian.

There have been a few people not happy about this but the way I see it, to get away from the muddy waters of NICE (CDC) the Canadian Consensus if followed rules out other conditions as much as is possible by identifying other causes of symptoms. This either leaves us with another condition or dianosis ME or no medical condition that is identifiable then what you are left with are the people who the oxford criteria sneaked in to muddy the waters. I think it has upset people because of the CFS thing. CFS is used else where to refer to ME as in the US. The nearest to use of ME in the US is CFIDS as far as I can see. It is an attempt there to move away from the broad CDC definition. Correct me if wrong.

This is why people get upset and confused. If you are given a CFS label then you start feeling vunerable when people talk about ME and subsets and all. They fear they might not fit and be left out and behind. This is understandable as I would be with a CFS label.

The only way to sort this out is by using the Candian Consensus for diagnosis.

Please correct me if I am wrong. I myself have a PVFS post viral fatigue label in my medical records (long story) but I have ME and am XMRV+ so what am I.

I think we have to addopt the attitude that a lot of other social and medical movements have done and decide that theese are external labels imposed on us through bigortary and ignorance. Through time we will come up with our own labels and will be that we all can wear. Examples. Medical A Down Syndroome used to be called monglism (in UK) more I can't think.
Social : the Gay movement, The Civil rights Movement and My favourite The Women's Movement Try not to call me a lady as there is nothing passive about me I am all women is an example)

Theese movements did not have a smooth ride either but what united them was thier oppression and denial of basic human and cival rights. (sound familiar)

Please tell me if wrong or nonsensical as really foggy.

 

[joyscobby]

DINNAE make me dee it hen, the pon on the stov an the IRON BRU is BILING!! A CANNAE TALK YA RUND OWNY MIR!!

JOYSCOBBY PLEASE CAN YOU TRANSLATE THE ABOVE

You wrote it obviously you can translate but i will play the game
do not make me do it ( hen a Glasgow term of endearment kind of like Dear to a woman) the pot is on the stove and (would not cook it) iron bru is boiling and I cannot run around any more.

now flex will ye hud yer whiste.
will you be quite ( affectionate annotation)
I cannot cope with being bilingual just now. Now even reading English with my broad NE Scottish accent. I dinna ken. I do not know.

 

[Tom]

1959

1959

In his detailed review of numerous outbreaks of Benign Myalgic Encephalomyelitis from 1934, Acheson described the common characteristics of the disease and clinical picture, which included agonising muscular pain, headache, nausea, sensory disturbances, stiffness of the neck and back, dizziness, muscular twitching, tremor and in-coordination, localised muscular weakness, emotional lability, problems with memory and concentration, hyperacusis, somnolence and insomnia, with relapses being almost inevitable, together with variability of symptoms. Signs included hepatic enlargement, lymphadenopathy and evidence of CNS involvement, nystagmus being almost invariable in some of the outbreaks. The question of hysteria was addressed and discounted: Final points against mass hysteria as a major factor in the syndrome are the consistency of the course of the illness and the similarities in the symptomsThe disorder is not a manifestation of mass hysteria and Acheson specifically warned that the diagnosis of ME should be reserved for those with (virally induced) evidence of CNS damage:
If not, the syndrome will become a convenient dumping ground for non-specific illnesses characterised by fluctuating aches and pains, fatigue and depression, exactly the situation that exists in the UK 50 years after Achesons prophecy

(ED Acheson. American Journal of Medicine, April 1959:569-595).


Then in the 80's CFS was born, or was it created .

 

[Tom]

Just wait till haggis night
Wee sleekit coowrin timorous beastie etc etc

Slainte.

Freedom

 

[V99]

I'm sure CFS was created.
It does not describe the patients it was supposed to, and includes many other illnesses. Therefore they don't have to try to sub group, or provide specific treatments, just cover it with vague nonsensical CBT/ GET.

As for Hysteria - do they know what they mean when they diagnose that in someone?



I can just understand it, but I wish I could comment in scottish.

 

[joyscobby]

Tom
Thats to a mouse. Burns night it is An adress to the haggis. Never done it though hate Haggis, tried it as a child. Never wore a kilt or a Tam o Shanter. hate whisky (when I could drink) love short bread. done the highland fling (but could not now) Braveheart is hstorically inaccurate but love the sentiment. You will never take our freedom. bagpipes music makes me cry (why?) proud to be Scottish but hate the steroetypes but they can be fun to play with as long as people know they are stereotypes.

och eye the noo

 

[flex]

Just wait till haggis night
Wee sleekit coowrin timorous beastie etc etc

Slainte.

Freedom

Aye, tilbe a brau nicht own nicht Tam!!

And on that note Gud nicht!!

 

[joyscobby]

I'm sure CFS was created.
It does not describe the patients it was supposed to, and includes many other illnesses. Therefore they don't have to try to sub group, or provide specific treatments, just cover it with vague nonsensical CBT/ GET.

As for Hysteria - do they know what they mean when they diagnose that in someone?



I can just understand it, but I wish I could comment in scottish.

Hysteria is a mysoginist concept..hence the hyst bit of it relateing to the womb. not sure if accurate but in the back of my brain I think it was coined by Frued to describe women as emotionaly overracting. long time since I read about it. Could look it up.

 

[flex]

Hysteria is a mysoginist concept..hence the hyst bit of it relateing to the womb. not sure if accurate but in the back of my brain I think it was coined by Frued to describe women as emotionaly overracting. long time since I read about it. Could look it up.

Hysteria means "wandering womb".

When blacks slave tried to run away from their slaves masters it wasnt because they wanted freedom. Psychiatrists said they were suffering from "Drapatomania" Drapeties was a runaway slave + mania.

Watch Dr Thomas Szasz on youtube. A psychiatrist who talked out about the corruption of psychiatry. SHOCKING SHOCKING!!!

('CFS' harms everyone, not just M.E. sufferers, youtube video.)

 

[flex]

^

If ME is a retrovirus like AIDS then you have to look at the cost of a lifetime of medication at $15,000 per year. Lets say you take them for 40years thats going to cost your insurance company 600,000 big ones in medication alone.

You are lucky you have had any testing let alone $100,000? worth. If people get no testing and no treatment and just rot away thats going to cost an insurance company a big fat zilch.

Who is going to pay out the billions in negligence for medical malpractice when the truth comes out about ME. I bet your insurance company wont voluteer to come round your house with a big fat cheque. Will they be lining up to compensate you for loss of earnings and loss of years of your life. Nope, I doubt it.

But you do have a point, it all seems such a mess!

At the end of the day they will all be working out their sums now. Whatever costs them the least will be the "truth".

 

[dannybex]

It seems to me that the insurance companies would save money if we found a diagnostic test and treatment. I don't know about you guys, but the round of 20 doctors and tests (MRI, SPECT, repeated blood tests for various pathogens, etc. etc. etc.) cost my insurance company probably 100k in the first 2 years. If they had a diagnostic test, that would be a couple hundred bucks, and a treatment would probably be less than what is already being spent. Seems to me the doctors and testers are the ones making the money here. What easier way to make money than for a doctor to say, your illness isn't real, collect $300, plus refer you to another specialist, repeat.

Although it would be GREAT and probably yes, cost saving to come up with a diagnostic test or marker, I think the other tests and treatment part will still be different for each patient, all depending on the factors involved in their developing CFS (or whatever label one wants to give this). Some may have been exposed to environmental toxins, some might have methylation issues, heavy metal issues, mold, intestinal permeability, delayed food sensitivities, etc., while others may be holding completely different pieces of the puzzle.

Even if XMRV is involved, all these other things will still have to be dealt with...I think.

Just my two cents,

Dan

 

[kim500]

There is one bit of evidence that I would like to nail down, if it exists, so I am putting out a general call for help. I am looking for any consultancy arrangement, contract, or payment to Simon Wessely from ATOS Origin. Please PM me with anything you may have.

BRAVO, Levi, for all your outstanding work.

Please tell, for all who don't know, what ATOS means. This will help us.

Thank you for your splendid detective work!

 

[kwietsol]

Right now with PLosONE publishers over his possible failure to declare competing interests..... I am not at liberty to discuss all of the evidence that has been accumulated and provided to PLosONE.

Go, Levi!