Mikowitz accused of manipulating XMRV paper

[floydguy]

I think genetics might be worthwhile to explore for me/cfs.

Personally, I think the genetics siren call is the ultimate cop out. How did the genetics change so significantly in a 1-2 generations? Perhaps there is a genetic component but it's not just genetics otherwise this wouldn't be a such a recent phenomenon - something must have altered the "genetics". Certainly it appears to run in families but nobody in my family has anything similar.

Glad to see you are at least clarifying between a retrovirus and a virus now.

 

[SilverbladeTE]

They'd never admit/allow to he public of the possibility that vaccines cause disease!
Such evidence would always get buried, toot sweet.
WAAAAY to much for too many in pwoer to lose if that ever got out...see, Wakefield!

Some of the 1950 oubtreak folk are still alive, be great if they could be asked, formally and recorded, for their memeories of the time?

 

[Daffodil]

they cant keep it buried forever..

 

[biophile]

I don't know if ME/CFS is relatively new, but it is not difficult to speculate about what would have happened to people with such symptoms throughout history. As horrible as this sounds, if ME/CFS has existed for hundreds or thousands of years, it has probably never been a better time to be alive with it, the further you go back in time the more dismal it gets. Unless of course there is something about modern living that is exacerbating it.

Neurasthenia was a bigger wastebasket diagnosis than CFS. After the decline of neurasthenia diagnoses, there would have been an increase in misguided psychiatric diagnoses instead. You can pretty much guess what would happen those people presenting with ME/CFS symptoms throughout most of the 20th century, after a routine examination didn't reveal an explanation for symptoms, out comes the circular gap-filling arguments about somatisation and depression and anxiety, regardless whether or not you actually exhibited these. This still happens now, but I would rather be alive in 2011 with ME/CFS than 1950. Not to mention the people who couldn't afford to see anyone and had no support whatsoever, see below.

Then think about having such symptoms 500 years ago. Back then the concept of mental illness was a lot cruder, medicine was still in the "dark ages" as well, and possession was still a common accusation, so I'm not sure how they would have interpreted ME/CFS symptoms. How severe the illness was would have obviously dictated the impact on your life. The more severely affected would have relied more on charity, and contrary to all this "there's no CFS in poor countries where people have to work to survive" BS from pseudo-skeptics that is actually contradicted by modern research, many would have simply ended up struggling or dying on the street because they simply couldn't have supported themselves even if their life depended on it, half this forum would probably be in that situation eventually if sent back in time.

 

[Angela Kennedy]

I don't know if ME/CFS is relatively new, but it is not difficult to speculate about what would have happened to people with such symptoms throughout history. As horrible as this sounds, if ME/CFS has existed for hundreds or thousands of years, it has probably never been a better time to be alive with it, the further you go back in time the more dismal it gets. Unless of course there is something about modern living that is exacerbating it.

Neurasthenia was a bigger wastebasket diagnosis than CFS. After the decline of neurasthenia diagnoses, there would have been an increase in misguided psychiatric diagnoses instead. You can pretty much guess what would happen those people presenting with ME/CFS symptoms throughout most of the 20th century, after a routine examination didn't reveal an explanation for symptoms, out comes the circular gap-filling arguments about somatisation and depression and anxiety, regardless whether or not you actually exhibited these. This still happens now, but I would rather be alive in 2011 with ME/CFS than 1950. Not to mention the people who couldn't afford to see anyone and had no support whatsoever, see below.

Then think about having such symptoms 500 years ago. Back then the concept of mental illness was a lot cruder, medicine was still in the "dark ages" as well, and possession was still a common accusation, so I'm not sure how they would have interpreted ME/CFS symptoms. How severe the illness was would have obviously dictated the impact on your life. The more severely affected would have relied more on charity, and contrary to all this "there's no CFS in poor countries where people have to work to survive" BS from pseudo-skeptics that is actually contradicted by modern research, many would have simply ended up struggling or dying on the street because they simply couldn't have supported themselves even if their life depended on it, half this forum would probably be in that situation eventually if sent back in time.

Excellent points biophile.

 

[free at last]

We do need to consider the source but we also need to stand back and look beyond this. To give ERV due credit, she has been following the science, backing up her claims with evidence and knows when she needs to have someone else look at what is discovered without getting her ego bruised, even if that means the conclusions turn out differently. That is how science works and one reason she is being taken seriously by the scientific community.

I ask why is ERV's scientific knowledge and experience being scrutinized, yet some in the ME/CFS community with less scientific knowledge and experience are beyond questioning?

Why is it people can be extremely rude not only in what they are saying but also implying and yet criticize others for rudeness simply because they may have a different opinion?

It's easy to judge things by surface appearances and see the world in black and white. It takes hard work and critical thinking to see the whole picture.

I don't like ERV;s language but that's beside the point. I am judging her with the same set of standards I would use on others. I might criticize the way she words things but I can also see that what she has saying may have merit.

Many of the criticisms of ERV I see here are simply strawman (ad hominem) logic fails.

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4
But hey even though mistakes may have been made I still trust Judys intentions were for the good.

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Moderator: Text removed. Please refer to the PR forum rules for appropriate posting guidelines.

 

[alex3619]

Hi, was there not an FOI release that cited a research talking about everyone on a vaccine trial in the UK getting something that looked like CFS? This was Behan according to the information, this government meeting was heavily redacted but not this bit. Vaccines as a trigger are possible.

The genetics link is not out of the question, it just requires additional factors. Examples include: genetics + pesticide + virus, or genetics + solvent + virus, and so on. The toxin side of things could easily be from modern toxins that were not around decades ago, or if around were uncommon. So the culprit is likely to be a toxin that is everywhere but not everyone contacts a lot of it, or is everywhere but not everyone is vulnerable due to genetics. By the way in this view it could be genetics + toxin + mold as well. This is a variant of the multiple hit hypothesis.

Bye
Alex

 

[floydguy]

I don't know if ME/CFS is relatively new, but it is not difficult to speculate about what would have happened to people with such symptoms throughout history. As horrible as this sounds, if ME/CFS has existed for hundreds or thousands of years, it has probably never been a better time to be alive with it, the further you go back in time the more dismal it gets. Unless of course there is something about modern living that is exacerbating it.

Neurasthenia was a bigger wastebasket diagnosis than CFS. After the decline of neurasthenia diagnoses, there would have been an increase in misguided psychiatric diagnoses instead. You can pretty much guess what would happen those people presenting with ME/CFS symptoms throughout most of the 20th century, after a routine examination didn't reveal an explanation for symptoms, out comes the circular gap-filling arguments about somatisation and depression and anxiety, regardless whether or not you actually exhibited these. This still happens now, but I would rather be alive in 2011 with ME/CFS than 1950. Not to mention the people who couldn't afford to see anyone and had no support whatsoever, see below.

Then think about having such symptoms 500 years ago. Back then the concept of mental illness was a lot cruder, medicine was still in the "dark ages" as well, and possession was still a common accusation, so I'm not sure how they would have interpreted ME/CFS symptoms. How severe the illness was would have obviously dictated the impact on your life. The more severely affected would have relied more on charity, and contrary to all this "there's no CFS in poor countries where people have to work to survive" BS from pseudo-skeptics that is actually contradicted by modern research, many would have simply ended up struggling or dying on the street because they simply couldn't have supported themselves even if their life depended on it, half this forum would probably be in that situation eventually if sent back in time.

Not sure what your point really is. There are few diseases that would be better to have 500 years ago than today. Most of the population would have already been dead for other reasons by the time they contracted CFS 500 years ago. Most other illnesses show some progress over time. Not so with CFS...From a medical perspective CFS is still in the dark ages. I am still awaiting for the age of "enlightenment".

 

[Battery Muncher]

I think biophile just meant that - if you got ME/CFS last time - you would probably died on the street of starvation. This is because there was no support system, and attitudes towards the sick/ mentally ill were brutal. Particularly in Victorian England, where illness and bad luck were almost treated as moral failings.

 

[ukxmrv]

It's not too late to revisit the Royal Free saga because we still have patients alive and still with ME who are survivors of that epidemic. Such a pity that we cannot get someone to investigate them.

 

[Angela Kennedy]

I think biophile just meant that - if you got ME/CFS last time - you would probably died on the street of starvation. This is because there was no support system, and attitudes towards the sick/ mentally ill were brutal. Particularly in Victorian England, where illness and bad luck were almost treated as moral failings.

Yes. Whereas nowadays, because of the advance in medical knowledge regarding some illnesses, that brutality has waned- although hasn't gone away, even with 'uncontested' illnesses, as the Third Reich T4 programme, and recent 'austerity measures' which rely on portraying ill and disabled as scroungers in the UK today demonstrate as just two examples.

The uncertainty of aetiology in ME/CFS has allowed the same level of prejudice against ME/CFS sufferers to flourish where it has waned in the case of other organic illnesses.

But biophile was also showing that it is a myth that 'CFS patients aren't found in poor societies'. What happens to ME/CFS patients is just that modern, slightly less impoverished conditions allow them to survive more (though barely, and not always).

 

[Battery Muncher]

Yes, thanks for that Angela. You expressed it much better than me.

 

[Tristen]

Hi, was there not an FOI release that cited a research talking about everyone on a vaccine trial in the UK getting something that looked like CFS? This was Behan according to the information, this government meeting was heavily redacted but not this bit. Vaccines as a trigger are possible.

The genetics link is not out of the question, it just requires additional factors. Examples include: genetics + pesticide + virus, or genetics + solvent + virus, and so on. The toxin side of things could easily be from modern toxins that were not around decades ago, or if around were uncommon. So the culprit is likely to be a toxin that is everywhere but not everyone contacts a lot of it, or is everywhere but not everyone is vulnerable due to genetics. By the way in this view it could be genetics + toxin + mold as well. This is a variant of the multiple hit hypothesis.

Bye
Alex

I agree. My feeling is that the disease occurs as a result of the right set of circumstances, but that's on top of an X Factor common for all of us. I doubt genetics are the X factor for reasons stated below; Clusters, and the explosion of the disease in the last 30 years (I don't buy that it's just more awareness of the disease). Genetics could be part of the circumstances for some, but not the x-factor for all.

IMO, it seems the x-factor is one of 3 things: ERV's, Contaminated (RV's, Viruses, etc) vaccines decades ago, or Environmental toxins that have caused immune damage. All require a perfect storm of circumstances to activate the dysfunction or latent infection.

Of course I'm talking about ME, and not just CFS or PVFS which opens an even bigger can of worms...or maybe not? Thanks for allowing me to share my opinion.

 

[Angela Kennedy]

Yes, thanks for that Angela. You expressed it much better than me.

You expressed it beautifully in the first place BM, as did biophile. I just said what you both said in a different way lol!

 

[currer]

Hi, was there not an FOI release that cited a research talking about everyone on a vaccine trial in the UK getting something that looked like CFS? This was Behan according to the information, this government meeting was heavily redacted but not this bit. Vaccines as a trigger are possible.

The genetics link is not out of the question, it just requires additional factors. Examples include: genetics + pesticide + virus, or genetics + solvent + virus, and so on. The toxin side of things could easily be from modern toxins that were not around decades ago, or if around were uncommon. So the culprit is likely to be a toxin that is everywhere but not everyone contacts a lot of it, or is everywhere but not everyone is vulnerable due to genetics. By the way in this view it could be genetics + toxin + mold as well. This is a variant of the multiple hit hypothesis.

Bye
Alex

Hi Alex,

Dont know about the FOI paper but the following is relevant to your point:

"ASIA, Autoimmune/Inflammatory Syndrome Induced by Adjuvants"
Shoenfeld and Levin.
Journal of autoimmunity 20.7.2010.

http://www.ncbi.nlm.nih.gov/pubmed/20708902

The only problem is that this hypothesis will be equally unpopular as the retroviral one, and as unlikely to receive unbiased investigation.

 

[alex3619]

I agree. My feeling is that the disease occurs as a result of the right set of circumstances, but that's on top of an X Factor common for all of us. I doubt genetics are the X factor for reasons stated below; Clusters, and the explosion of the disease in the last 30 years (I don't buy that it's just more awareness of the disease). Genetics could be part of the circumstances for some, but not the x-factor for all.

IMO, it seems the x-factor is one of 3 things: ERV's, Contaminated (RV's, Viruses, etc) vaccines decades ago, or Environmental toxins that have caused immune damage. All require a perfect storm of circumstances to activate the dysfunction or latent infection.

Of course I'm talking about ME, and not just CFS or PVFS which opens an even bigger can of worms...or maybe not? Thanks for allowing me to share my opinion.

Hi Angela, I used the genetics + toxins + pathogen example as it showed how genetics could play a big part - the genetics determines toxin vulnerability, and the toxins exploit that, then the pathogen does the rest. Genetics cannot be ruled out but it does require several things. Genetics plus virus alone does not count unless its a new virus as it cannot then explain the epidemics. The toxin also has to be a new toxin for similar reasons. This is not my preferred theory, but I can't discount it either.

However, I am very curious as to why there have not been any epidemics in recent years. I have brought this up before, but I think it could be important to our understanding.

Bye
Alex

PS Another factor that might make genetics important is vaccines. Vaccines are relatively new, and it might be that those with particular genetic makeup do not respond well to some kinds of vaccines, leading to ME and other things. This would mean the reaction is uncommon, confined to certain people,and so hard to find in simple studies looking for a vaccine link.

 

[Guido den Broeder]

However, I am very curious as to why there have not been any epidemics in recent years.

The frequency of (reported) outbreaks was reduced significantly with the introduction of mass polio vaccination programs in the 1960s.

 

[max]

the Behan reference to vaccine 'issues' of "intractible fatigue in 100% patients" was in a discussion at the 92 CIBA symposium. He was approached to look at a research trial involving a new antiviral vaccine where there had been problems. He also went on to say he had witnessed post viral fatigue following rubella vaccination.

A vaccine/ME link will never see the light of day - anyone with a bank account knows that.

Incidently,this was during a discussion concerning retrovirus involvement in ME/cfs - it was the presentation that was rearranged at the last minute when Elaine de Freitas was warned off - the replacement speaker (Tom Folks) dismissed de Freitas saying there were issues with PCR and 'contamination'.

20years on and nothing has changed - nothing.

..... and still no gloating/goading (sp?) from the UK media ref Judy/WPI .........

 

[taniaaust1]

just looked up the 'Royal Free Disease'. I like the way patients were almost entirely unaffected.
According to
http://www.bmj.com/content/2/5050/927.full.pdf
Out of 300, 292 were members of staff. So they were clearly exposed to something the patients (the ones most likely to be effected) were not. My guess is they were vaccinated. This is not the hallmark of an infectious disease.

If it wasnt something to do with vaccinations the staff would of had... Maybe it came from where the staff were eatting or from the food of that place? I know occassionally patients will eat out of their rooms in hospital cafes when they have visitors. So would make sense then of only 8 patients getting ME while 292 members of staff did.

oh I just had another thought which would make sense. What if this illness has a long incubation period. Most patients would hve left hospital before they got it and probably then go undiagnosed hence result in very small numbers of patients showing it.. while the nurses still there were diagnosed.

I cant think of any other things which would of caused such a difference in patient/nurse rates.

 

[Jeffy14]

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