• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The Fight is on...Imperial College XMRV Study

joyscobby

Senior Member
Messages
156
There was a post earlier in this thread where someone said something 250,000 people in the UK suffer from CFS, out of those 250,000 people, I very much doubt 250,000 or 100% of them have ME or the true Canadian criteria CFS or whatever you wish to call it.

When the biological cause is found, I'd love to know what percent of people have biological CFS/ME.

If a test becomes available, what will happen to those people who have no biological cause? My hope is that it'll put an end to those people who are 'trying it on' if you know what I mean. Seriously though, what would happen with them?


This aguement is one put across by thoose who say that ME is not a real Disease that leads to polls such as in the Daily Mail. Where is the evidence of people facking it? Who says thier symptoms are not genuine? Just because someone is misdiagnosed it does not mean they are fakeing it. If they do not fit they Canadian Consesus for ME, have no other identifiable illness ruled out by its aplication then it may be the case that they have something else. It does not mean they are not ill in anyway.
There are easier illnesses to fake. that need much less research such as clinical depression, back ache that would give easier acess to benefits than ME.
This illusion that we are facking it when we are genuinely sick no matter what the cause is part of the reason we are denied acess to benefits as ME suffers or sick in general. this is the reason employment Support is being brought in to force the sick to work.
The Uk attitude to benefits claimants as deserving or undesrving poor is part of our national shame. It is draconian and stems back to the poor laws that would of had us in the workhouse. So maybe that is the solution the the daily mail brigade as I call them would seek.

For information. The Workhouse was set up in Victorian times. The " deserving" poor where given support through the local parish (church) the undeserving were sent to the work house, al arge instution where the poor were sent to work for their megre living. The cretieria for poor relief in the parish was a moral one. For example a widow who had children would get relief from the parish, if she had a child out of wedlock this would be withdrawn and she would be given no option to go in to the workhouse where she would be seperated from her children. In a lot of cases it was a soul destroying death sentence.
 
K

Knackered

Guest
This aguement is one put across by thoose who say that ME is not a real Disease that leads to polls such as in the Daily Mail.

I disagree, for example. Back pain is a genuine complaint, anyone can claim to have back ache, people who claim to have back ache who do not make life difficult for those who do.
If a sure fire test was discovered to show whether a person had back ache or not, would that not be better for the people who had back ache? And would not wishing for such a thing something people with back ache should wish for?

Where is the evidence of people facking it? Who says thier symptoms are not genuine?

The same can be said for some people with back ache.
 

flex

Senior Member
Messages
304
Location
London area
Apparently the dumping took place in July, 1988. The Daily Mail story appeared almost 20 years later, December 15, 2007.

According to the Daily Mail, not only did the water cause deadly health problems for residents and visitors, but there was collusion at all levels of government to cover it up.

Way down in the story there are these disturbing facts:



Here's what I'd like to know: Was Simon Wessely part of one of those advisory groups?[/QUOTE]

YES!!
 

valia

Senior Member
Messages
207
Location
UK
There was a post earlier in this thread where someone said something 250,000 people in the UK suffer from CFS, out of those 250,000 people, I very much doubt 250,000 or 100% of them have ME or the true Canadian criteria CFS or whatever you wish to call it.

When the biological cause is found, I'd love to know what percent of people have biological CFS/ME.

If a test becomes available, what will happen to those people who have no biological cause? My hope is that it'll put an end to those people who are 'trying it on' if you know what I mean. Seriously though, what would happen with them?



Why does "Animal Farm" come to mind?
 

Advocate

Senior Member
Messages
529
Location
U.S.A.
http://ruscombegreen.blogspot.com/2008/01/safe-water-camelford-cover-up-plus.html

"Interestingly one of the primary architects of this lethal cover-up was psychiatrist Professor Simon Wessely - has has been notorious for his equally scandalous cover-ups of the biomedical plight of Gulf War Veterans and ME/CFS labelled patients - the latter I had heard first hand from patients who had visited him - although to be fair I also heard from on person with ME who thought he was good."

"In the Journal of Psychosomatic Research, Vol 39, No 1. pp.1 9. 1995, Wessely together with his colleague Anthony David, published a paper entitled 'The Legend Of Camelford : Medical Consequences Of A Water Pollution Accident.http://www.ncbi.nlm.nih.gov/pubmed/7760298 "There was little cause for concern," announced Wessely. He also accused Camelford residents of somatisation and the media of irresponsible reporting of this water-poisoning incident. Wessely apparently also blamed those affected of sensationalising their symptoms in order to get compensation."

Hi Xanadu,

Thank you for the links. I assume that Levi has this information. It seems that certain types of corruption occur in both our countries.
 

flex

Senior Member
Messages
304
Location
London area
There was a post earlier in this thread where someone said something 250,000 people in the UK suffer from CFS, out of those 250,000 people, I very much doubt 250,000 or 100% of them have ME or the true Canadian criteria CFS or whatever you wish to call it.
My sister's boyfriend's ex-wife's boyfriend has CFS. I've been told that when he's needed to do something he's sick, then Friday to Sunday he miraculously gets better and goes to watch football and goes to the pub and whatever else, he predicts when he isn't going to be well too, my sister says he isn't at all like me inregards to my illness.
When the biological cause is found, I'd love to know what percent of people have biological CFS/ME.

If a test becomes available, what will happen to those people who have no biological cause? My hope is that it'll put an end to those people who are 'trying it on' if you know what I mean. Seriously though, what would happen with them?

Population of UK - 60million
Prevelence of XMRV in general population 4%
if only 1 in ten xmrv positives causes ME
4% of 60 million divided by 10 =
240,000
Other undiagnosed Neuro issues because of CFS fraud ???
Wessely says 1 million "CFS" three quaters dont have XMRV as cause (BEFORE IC STUDY)
You want test to prove ME cause. Is your answer above?

ME IS NOT CFS!!!! UNLESS CANADIAN CRITERIA IS ME!!!

UK population of ME 250,000
minus 1
your brother in-law
 
K

Knackered

Guest
Population of UK - 60million
Prevelence of XMRV in general population 4%
4% of 60 million =
240,000
Other undiagnosed Neuro issues because of CFS fraud ???
Wessely says 1 million "CFS" three quters dont have XMRV as cause (BEFORE IC STUDY)
You want test to prove ME cause. Is your answer above?

ME IS NOT CFS!!!! UNLESS CANADIAN CRITERIA IS ME!!!

UK population of ME 250,000
minus 1
your brother in-law

4% of 60,000,000 is 2.4 million.

If it seems XMRV is the cause only 10% of those with XMRV go on to develop ME if it's true ~250,000 of us have it.

~0.4% of the UK population have ME.
 
Messages
63
Hi Xanadu,

Thank you for the links. I assume that Levi has this information. It seems that certain types of corruption occur in both our countries.

Hi Advocate, Not sure it's germane to Levi. Yup, corrupt psychs don't observe national boundaries, unlike XMRV. Here's a senior American fan of Wessely's Camelford cover-up.

The Camelford Hysteria: A Lesson for ECT? by Max Fink, MD
http://www.psychiatrictimes.com/electroconvulsive-therapy/article/10168/52026?pageNumber=2&verify=0

Max Fink; The Grandfather of American ECT
http://www.healthyplace.com/depress...the-grandfather-of-american-ect/menu-id-1362/
 

Min

Guest
Messages
1,387
Location
UK
Camelford water poisoning cover up:

http://news.bbc.co.uk/1/hi/england/cornwall/4531668.stm


"A post-mortem test on a woman who drank water during the Camelford water poisoning incident has found abnormally high levels of aluminium in her brain.

It is the strongest evidence yet of a possible link between the poisoning and a disease similar to Alzheimer's.

Water in the Cornish town was contaminated with 20 tonnes of aluminium sulphate in 1988.

Hundreds of people said they became ill after the toxic chemical was put into the wrong tank at a treatment works.

Inquest adjourned

West Somerset Coroner Michael Rose released the post-mortem examination results on Thursday.

He asked leading neuropathologist Prof Margaret Esiri to examine the woman's brain and spinal cord following her death in Musgrove Park Hospital, Taunton, in February last year.


Further research will be needed before the significance of the elevated brain aluminium concentration... can be clarified
Michael Rose, coroner

The woman was living in Camelford at the time of the incident.

It was discovered that she died from beta amyloid angiopathy, a form of cerebrovascular disease usually associated with Alzheimer's disease, which could be connected to an abnormally high level of aluminium in her brain.

Mr Rose said: "Further research will be needed before the significance of the elevated brain aluminium concentration in this case can be clarified.

"A scientific report on the case has been submitted for publication. The inquest will stand adjourned until the completion of further research."

'Past failures'

In the 17 years since the disaster at Lowermoor Treatment Works, local people have complained of a range of health issues ranging from brain damage and memory loss to joint problems.

Campaigners said the findings supported their claims, but criticised the authorities' failure to carry out any targeted post mortem examinations on water poisoning victims until now.


Lib Dem peer Lord Tyler, until this year the MP for North Cornwall, said the "scandalous cover-up" of the incident was gradually unravelling.

"Inevitably, this investigation will be too late for some victims, and has been thwarted by inadequate medical records and lax monitoring of the 20,000 people, including many children, whose health may have been affected," he said.

"But better late than never. The accident itself was a real disaster, but the subsequent cover-up was a scandal.

"The coroner's conclusions today add substantially to the weight of evidence and provide a devastating example of past failures.

"However, at long last there is a real chance that justice will be seen to be done, and realistic compensation considered."

Denis Cronin, the director of public health at the North and East Cornwall Primary Care Trust, said while he welcomed the new information, people should not be alarmed by the results of a single post mortem examination.

Out-of-court settlement

In 1991, the then South West Water Authority was convicted at Exeter Crown Court of supplying water likely to endanger public health and fined 10,000, with 25,000 costs.

Three years later 148 people won an out-of-court settlement totalling 400,000.

A draft independent report into the incident, the third to be carried out, said in January it was unlikely that the chemicals involved in the incident would have caused any delayed or persistent health effects.

No conclusive link was found between the incident and the chronic symptoms and diseases."

---------------------------------------------------------------------------------------------------------------------------------------

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1127323/

Anthony David writes:
"The reopening of the Camelford case is regrettable as the people concerned may worry anew about their health. Wessely and I recommended that incidents such as these should trigger a rapid response by public health professionals to gather complete data before litigation, media attention, and local fears distort health perception. It seems that such lessons have still to be learnt."

--------------------------------------------------------------------------------------------------------------------------------------------
http://ruscombegreen.blogspot.com/2008/01/safe-water-camelford-cover-up-plus.html

"Interestingly one of the primary architects of this lethal cover-up was psychiatrist Professor Simon Wessely - has has been notorious for his equally scandalous cover-ups of the biomedical plight of Gulf War Veterans and ME/CFS ...

...In the Journal of Psychosomatic Research, Vol 39, No 1. pp.1 9. 1995, Wessely together with his colleague Anthony David, published a paper entitled 'The Legend Of Camelford : Medical Consequences Of A Water Pollution Accident' "There was little cause for concern," announced Wessely. He also accused Camelford residents of somatisation and the media of irresponsible reporting of this water-poisoning incident. Wessely apparently also blamed those affected of sensationalising their symptoms in order to get compensation.

Here is one recent comment from a Green party member: "It was a scandal. As in the Black Report on the Seascale leukaemias, they used the scholastic method, not the scientific method, to decide that there was no causal link between the chemicals in the water and the symptoms suffered." "
 

kurt

Senior Member
Messages
1,186
Location
USA
My sister's boyfriend's ex-wife's boyfriend has CFS. I've been told that when he's needed to do something he's sick, then Friday to Sunday he miraculously gets better and goes to watch football and goes to the pub and whatever else, he predicts when he isn't going to be well too, my sister says he isn't at all like me inregards to my illness. Maybe they just don't want to work. Offensive isn't it? I know I find it offensive.

Actually there are CFS cases like that. Stress causes flare-up of CFS in some people and also if some people rest for several days they can be active for a day or two. But I understand the point, and yes we get a lot of mistaken identity with malingerers. What is really sad is the mythology that there are no biomarkers, no tests for CFS. That is just blatently false and it is repeated so often that even here people seem to believe it. The problem is that many in the medical profession do not WANT to have biomarkers and tests for CFS, and the authorities are not interested in getting involved. A suite of tests could easily be given to every person claiming disability for CFS to distinguish between the real cases and psych cases. Also, the psych cases are real too but they just need to be treated differently. Nobody in their right mind would fake CFS, therefore if someone is faking CFS they probably are not in their right mind...

The test suite? It would probably have to be a panel of the most common pathogens found in CFS, an immune panel, a mitochondria panel, a liver detox profile, an endocrine panel, an EEG or PET scan, and an oxygen test for PEM, things like that. That would quickly separete out the CFS patients, and also probably separate the early and late stage CFS cases from the ME cases. All are on the same spectrum, just different levels of severity. I know that personally because have been through pretty much every stage myself. People saying 'we have CFS and you do not' maybe do not realize, have not experienced the different stages of the disease.
 

Dr. Yes

Shame on You
Messages
868
From Kurt:
What is really sad is the mythology that there are no biomarkers, no tests for CFS. That is just blatently false and it is repeated so often that even here people seem to believe it.... A suite of tests could easily be given to every person claiming disability for CFS to distinguish between the real cases and psych cases.
Totally agree, and I'm so sick of hearing about the "diagnosis of exclusion", "no markers", no lab tests, etc., etc. One test they should definitely add is a SPECT scan, which (if read properly) has an even better chance of finding abnormalities in ME/CFS patients than a PET.
 

Anika

Senior Member
Messages
148
Location
U.S.
The test suite? It would probably have to be a panel of the most common pathogens found in CFS, an immune panel, a mitochondria panel, a liver detox profile, an endocrine panel, an EEG or PET scan, and an oxygen test for PEM, things like that. That would quickly separete out the CFS patients, and also probably separate the early and late stage CFS cases from the ME cases. All are on the same spectrum, just different levels of severity. I know that personally because have been through pretty much every stage myself. People saying 'we have CFS and you do not' maybe do not realize, have not experienced the different stages of the disease.

Kurt, my question probably belongs on a different thread but I'm not sure how to do it. I'm curious about possibly distinguishing early and late CFS and ME - are there some tests that would help to show progression, or perhaps positive changes in response to treatment? And how would they distinguish early and late CFS from ME? If this has been covered elsewhere, I would appreciate a point in that direction.

Quite a few of the tests you mention are fairly "new" since I first got tested but might be more widely available now. I guess I'm wondering, are there some tests that might be especially good to suggest new treatments or monitor treatment response, assuming one already validated the diagnosis with some tests? I’m trying to figure out what tests might make sense in future, or at intervals (apart from dealing with new symptoms).

Thanks
 

V99

Senior Member
Messages
1,471
Location
UK
Great article joyscobby, what a laugh.

Love this bit "Regardless, they say almighty antiretroviral drugs should not be acclimated to amusement CFS because there is not abundant affirmation that this is all-important or helpful."
 
K

Knackered

Guest
Lol, beef pain.

So, where does it hurt Mr Smith?
In the beef Doctor, it hurts in the beef.
Touch of the ol' beef pain huh?