*2 new* letters, Myra McClue, Annette Whittemore

[jace]

Fred, thanks for answering some questions I had in your post 132 :Sign Good Job:

 

[Gerwyn]

Can we please stop with the put-downs!

What do you expect when someone makes a point like viruses hidden from the immune system and cant understand why there would be an antibody response to an env .This in a response to a long line of comments like that for whatever reason

 

[Gerwyn]

I think both are true: Ruscetti, Mikovits, Silverman are all bumping up against the bias against ME/CFS and they are astonished and angered by it. That doesn't mean, though, that Dr. Mikovits has played this well in the research community; when Dr. Raccinello - says something like " the WPI doesn't think anyone knows how to do PCR" in public - there's some anger there.

I think both things are true - there really is a big bias against CFS - you could see that when McClure, based on what we know to be tentative evidence, stated there is no XMRV in the UK. That wasn't an objective (or smart) statement given the fact that they did not do a replication study. Ditto with Kuppeveld. The WPI was rightfully upset but I think it would have been better if they had held back more.

Honestly with regard to XMRV I don't think it will matter that much; if (when?) XMRV is found that will be big enough to wash away any problems.

I think that the WPI response to the European studies was highly appropiate.There is no such thing as doing PCR.It is a question of using a pcr approach appropiate to the task.The WPI ,rightly,pointed out that the PCR approaches used by the Europeans was technically inadequate for a number of reasons.If they had held back more the research would have been hammered.I for one have had enough of organisations taking an approach of appeasement.The WPI approach was direct and truthful the complete opposite to the European approach

 

[HopingSince88]

Elizabeth Clark (nee Sainsbury) died of cancer. A trust was set up in her name which, until 2005, funded research and support for, amongst other things, in-home palliative care.





Annabel's son, Jason, died of cancer, aged 30. He left his 2.5m inheritance to a charity aimed at helping young people in farming communities. See article below.

http://www.dailymail.co.uk/news/art...llions--just-like-mother-20-years-before.html

Then there is Clare Sainsbury, daughter of Lord David, who has Aspergers but wasn't diagnosed until she was an adult. She has written a well received book about her illness called 'Martian in the Playground' and has used funds from her father to set up CLASS (Cambridge Lifespan Asperger Syndrome Service).

I find it interesting that there are two family members dying of cancer in their youth, and another with Aspbergers. Perhaps the family should be educated about and checked for XMRV? That might change their focus on where to award grant monies.

 

[Gerwyn]

Gerwyn,

It costs nothing to be polite to people. Particularly ill people whose symptoms can be worsened by ill-judged comments posted in forums such as these. It should be possible to debate with people without treating them like idiots - this seems to be a skill which you have yet to develop. I would have been more polite about this but there are a trail of obnoxious messages left by you in which you give no such consideration to others.

Can you make an effort in future to refrain from belittling people. I find it very distasteful and I'm sure I'm not the only one.


I never belittle anyone things are not quite what they seem especially in the current climate >

if you can find an obnoxious message then please forward one.

i am well aware of what it is like to be ill having had no cognitive function for almost five years.

It is actually the danger of people being harmed by ill judged comments that worries me

iIl judged comments in my view are dogmatic opinions masquerading as scientific facts or propaganda posing as truth.

Many vulnerable people lack the ability,scientific training or cognitive awareness to distinguish the difference

There is a difference between debate and presenting the same argument time after time regardless of what has been said to counter that argument.

This is the tactic I,ve been repeatedly faced with.That is a tactic that I find obnoxious as it has the potential to cause unnecessary distress to so many people

If someone purports to report something as scientific fact when it is not and continues to repeat it ad nausiem despite being presented with contrary evidence then that is not a debate.

I am acutely aware of the vulnerability and level of desperation of people with ME who read these posts.This is why I find the repetition of inaccurate dogma to be obnoxious.

If people persist in repetition of these mantras what would you suggest as an alternative to my reaction when my responses are otherwise ignored.

Would you prefer that many people become stressed,despairing and anxious as a result of being continually exposed to groundless propaganda or a few who persist in repeating unfounded mantras as if they had some objective validity

Finally I would say that many people stick rigidly to their beliefs which though contrary to scientific evidence are sincerely held.

Others put forward "beliefs" for other quite different reasons.

We have had many examples of the latter in recent days and weeks.

 

[flybro]

Gerwyn:-

I for one have had enough of organisations taking an approach of appeasement.The WPI approach was direct and truthful the complete opposite to the European approach

Here, here Gerwyn, I couldn't agree more.

This disease turned me into to someone that shys away from discord or controversy. The treatment I've had from the medical establsihment becasue of this disease has been more traumatic than the disease itself, and yes I know '1st hand' how traumatic this disease is.

Annette Whittmore & THE WPI have given ME and me, more support and representation in the last 6 months than anyone actually employed to do EVER.

I dont just want, I need more of this, 'direct and truthful', and I am sick of this, 'approach of appeasement'.

 

[Rivotril]

I think that the WPI response to the European studies was highly appropiate.There is no such thing as doing PCR.It is a question of using a pcr approach appropiate to the task.The WPI ,rightly,pointed out that the PCR approaches used by the Europeans was technically inadequate for a number of reasons.If they had held back more the research would have been hammered.I for one have had enough of organisations taking an approach of appeasement.The WPI approach was direct and truthful the complete opposite to the European approach

I fully agree. Appeasement with people who do unjust science (like Kuppeveld knowing about the positive XMRV results in his own samples by WPI, Van der Meer who is nothing in retroviral business, he is not even a virologist but just an internal medicine doctor, telling that the Americans are unprofessional and their test is pretentious, and so on) just does not work.

Integer scientific cooperation is only possible with people who want to cooperate, because their goal is to truly help and get people cured over time Kuppeveld just didn't want this, McClure steps out of the game...Again there is enough evidence that it's not in the interests of the psycho-scholed to contribute to solve the XMRV-issue, they would only lose their own jobs, power, and money to do so. So they would like appeasement, as it would slow down the process of solving the XMRV-issue. therefore, in general, I really embrace the WPI-approach.


Chamberlain was not the last one who made the big mistake to think appeasement would work in a situation where the other party just had no motives to cooperate and work things out together.

My honest opinion: Gerwyn, it's great to have you here on this forum, I appriciate your contributions a lot

*appreciate (no brainfog this time, just a mistype : ) )

 

[Cookie Monster]

My honest opinion: Gerwyn, it's great to have you here on this forum, I appriciate your contributions a lot

My sentiments entirely - i feel we are very lucky to have Gerwyn with us and i thank him kindly for all of his helpful contributions to us as we ride this rollercoaster without the scientific insight necessary to contest the many false accusations aimed at the WPI's and our cause from those unprofessional europeans with their hidden agendas.

Not that you need people to back you up Gerwyn but a show of appreciation is very much deserved.

 

[Martlet]

What do you expect when someone makes a point like viruses hidden from the immune system and cant understand why there would be an antibody response to an env .This in a response to a long line of comments like that for whatever reason

Moderator Note: We expect members to remain polite. There have been numerous (I have lost count) complaints about the tone being taken by some in this thread, but I have stayed out of it to see if it will self-resolve. It seems not, so please will you and others please direct your comments at the issues, not at individuals? And please will you try to do it with some degree of decorum. Belittling others is unacceptable.

 

[bel canto]

iIl judged comments in my view are dogmatic opinions masquerading as scientific facts or propaganda posing as truth.

Many vulnerable people lack the ability,scientific training or cognitive awareness to distinguish the difference

There is a difference between debate and presenting the same argument time after time regardless of what has been said to counter that argument.

This is the tactic I,ve been repeatedly faced with.That is a tactic that I find obnoxious as it has the potential to cause unnecessary distress to so many people

If someone purports to report something as scientific fact when it is not and continues to repeat it ad nausiem despite being presented with contrary evidence then that is not a debate.

Gerwyn,

It does seem that this happens repeatedly on this forum - several different threads are good examples. Thank you for challenging statements that are presented as facts when they are not based on such. You have done so for the most part exceptionally patiently. I don't think that I could have been as restrained as you generally are. You expend a lot of energy on this because you want to help those of us (most of us) who do not have the deep understanding of the science, and we are grateful.

bel

 

[Gerwyn]

Moderator Note: We expect members to remain polite. There have been numerous (I have lost count) complaints about the tone being taken by some in this thread, but I have stayed out of it to see if it will self-resolve. It seems not, so please will you and others please direct your comments at the issues, not at individuals? And please will you try to do it with some degree of decorum. Belittling others is unacceptable.

I have not belittled anyone.Is it polite to repeat the same points ad nausiem? I think that I have been for the most part very patient when faced with propaganda posing as fact or people presenting faux positions for one reason or another

 

[Adam]

iIl judged comments in my view are dogmatic opinions masquerading as scientific facts or propaganda posing as truth.

Many vulnerable people lack the ability,scientific training or cognitive awareness to distinguish the difference

There is a difference between debate and presenting the same argument time after time regardless of what has been said to counter that argument.

This is the tactic I,ve been repeatedly faced with.That is a tactic that I find obnoxious as it has the potential to cause unnecessary distress to so many people

If someone purports to report something as scientific fact when it is not and continues to repeat it ad nausiem despite being presented with contrary evidence then that is not a debate.

Gerwyn,

It does seem that this happens repeatedly on this forum - several different threads are good examples. Thank you for challenging statements that are presented as facts when they are not based on such. You have done so for the most part exceptionally patiently. I don't think that I could have been as restrained as you generally are. You expend a lot of energy on this because you want to help those of us (most of us) who do not have the deep understanding of the science, and we are grateful.

bel

Excellent observations Bel Canto.

Thank you for having the courage to speak up.

There is a degree of subtlety in what is going on here; the spreading of doubt which subsequently undermines peoples confidence. I know of several members on here who feel ground down by the incessant criticisms of Gerwyn's posts, to the extent it is making them reluctant to participate. You can include me in that number BTW.

I also note FWIW (and I accept here it is entirely up to the individuals concerned whether or not they wish divulge personal information about themselves anf their illness) that many (if not all) of those serial doubters trying to sow their insidious seeds in our community, neither engage with other PR members in Chat or in the Community Lounge threads or disclose any information about themselves ie. activity level, length of illness, symptoms etc.

If we are not careful the forum will be taken over by elements who do not wish to see a biomedical cause of CFS/ME substantiated. Or who wish to denigrate WPI, for reasons we can only guess at?

We should perhaps be mindful of the recent invasion of PR by overt elements (Bad Science cohort) and realise that others might employ a rather more covert stratagem.

As Bel Canto said, thank you to Gerwyn for not bowing to these obnoxious tactics. Thank you to Gerwyn for his time and patience. Thank you to Gerwyn for trying to maintain the integrity and good name of the WPI. I hope his efforts are appreciated. I have seen many posts on here thanking him, so I know he is not alone.

I suspect the campaign against Gerwyn will go on, which is, IMO, rather sad.

 

[Cookie Monster]

Simon Wessely's CV includes covering up :-

ME/CFS
Gulf War Syndrome
Overhead Pylons cancer link.
The Camelford water disaster
Mobile phones cancer link

Yet more denial studies today in the uk media regarding PTSD cover ups.

http://news.bbc.co.uk/1/hi/health/8677941.stm

This is despite the fact that approx 10% of our prison population are ex-forces.

 

[Cort]

When did Dr. Racaniello say that, Cort? I must have missed it!

Its in this audiochat
http://www.twiv.tv/2010/04/04/twiv-76-xmrv-with-professor-stephen-goff/

 

[Cort]

Our goal is to discuss the issues - not make reflections on the people discussing them. That goal is obviously not always met.

Gerwyn posts frequently and obviously very informatively. Certainly the great majority of Gerwyns posts are just fine but at times they do get personal and combative. If we could just weed out the cutting remarks - which usually take up only a small part of post - but do linger in peoples minds - and are clearly there - we'd be in great shape.

 

[Cort]

Excellent observations Bel Canto.

Thank you for having the courage to speak up.

There is a degree of subtlety in what is going on here; the spreading of doubt which subsequently undermines peoples confidence. I know of several members on here who feel ground down by the incessant criticisms of Gerwyn's posts, to the extent it is making them reluctant to participate. You can include me in that number BTW.

I also note FWIW (and I accept here it is entirely up to the individuals concerned whether or not they wish divulge personal information about themselves anf their illness) that many (if not all) of those serial doubters trying to sow their insidious seeds in our community, neither engage with other PR members in Chat or in the Community Lounge threads or disclose any information about themselves ie. activity level, length of illness, symptoms etc.

If we are not careful the forum will be taken over by elements who do not wish to see a biomedical cause of CFS/ME substantiated. Or who wish to denigrate WPI, for reasons we can only guess at?

We should perhaps be mindful of the recent invasion of PR by overt elements (Bad Science cohort) and realise that others might employ a rather more covert stratagem.

I can't imagine that the Forums, 1,900 people strong, are going to be taken over by doubters of a biomedical cause of CFS. We banned several people who engaged on the Bad Science thread. Let us know if you think people are trolling around the Forums causing mischief.

We don't allow campaigns against anyone. If you can find someone who's jumping on top of everything Gerwyn for is personally attacking her then please let us know and we will address that.

 

[Cort]

I think they tried hard with Mclure Cort despite her cler breach of scientific protocol.She has refused to participate in an exchange of samples and wants nothing more to do with CFS research or have her techniques examined for effectiveness.

She had enough faith in them to state that there is no XMRV inthe UK but not as much faith now it seems

I think the problem was that she greatly overreached in her statement that there is no XMRV in CFS patients in the UK. She took one slice at it and over-reached based on that.

 

[Gerwyn]

Our goal is to discuss the issues - not make reflections on the people discussing them. That goal is obviously not always met.

Gerwyn posts frequently and obviously very informatively. Certainly the great majority of Gerwyns posts are just fine but at times they do get personal and combative. If we could just weed out the cutting remarks - which usually take up only a small part of post - but do linger in peoples minds - and are clearly there - we'd be in great shape.

If people stopped repeating unfounded propaganda and did not come from other forums to cause mischief for political reasons we would be in even better shape.I generally get combative when people repeatedly make claims they pretend to be based on science when they are not.I do that because i think it.s wrong to distress vulnerable people with such tactics.I generally only do it when people keep presenting the same faux claims time and time again despite being presented with the scientific evidence to the contrary.I do admit that I put the sensitivities of the many well ahead of the sensitivities of the few.If they cant stand the heat stay out of the kitchen.Yes I do get cutting as a last resort.I have never insulted anyone personally and anyone presented with the same spiel time and time again would be at least a little cutting and probably do a lot worse

 

[Roy S]

I'm not a scientist and I stay out of the debates on the science. I have not found Gerwyn's posts objectionable and I appreciate his efforts.

There have been times in the past months that I have read a paper and think I have some understanding of it. Then in discussion threads some comments by nonscientists have made me wonder if my brain dysfunction is much worse than I thought. Then someone, usually Gerwyn, posts corrected information and I realize my understanding was correct. That helps in more ways than one.

In my opinion statements of scientific fact often need to be blunt. Flowery diplomatic language just doesn't get the job done.

On the subject of spreading doubt, I object to it when it seems to be manipulation as part of an agenda which undermines (intentionally or not) progress towards beating this damned disease.

 

[Martlet]

I generally get combative when people repeatedly make claims they pretend to be based on science when they are not.I do that because i think it.s wrong to distress vulnerable people with such tactics.I generally only do it when people keep presenting the same faux claims time and time again despite being presented with the scientific evidence to the contrary.I do admit that I put the sensitivities of the many well ahead of the sensitivities of the few.If they cant stand the heat stay out of the kitchen.Yes I do get cutting as a last resort.I have never insulted anyone personally and anyone presented with the same spiel time and time again would be at least a little cutting and probably do a lot worse

Moderator note: How many ways do people have to say that they find your tone upsetting before you will believe them? And how many times will Admin and Moderators have to intervene before you understand that cutting remarks are against the rules - even when used as a last resort? Others are as interested in this topic as you are, including some long-standing members who are never-the-less reporting some of your posts. Please tone it down. You are a valued member but that does not mean you have a free rein to write however you please regardless of other members.