What's Happened to Dr Jonathan Kerr?

[Nielk]

I was one of Dr.Eenlander's patients who had blood drawn to be sent to Dr. Kerr. I never heard that these samples were missing.
All i heard back was that all of Dr. Kerr's studies on XMRV came out negative.
It is really strange what's going on.
Who can we trust here and what is really going on behind closed doors.

The word "conspiracy" keeps busing in my head.

 

[ukxmrv]

NielK, if you do a search for Dr Enlander's posts you should find a reference to the lost samples. Dr Kerr lost his laboratory when he lost his job (the St George's hospital one). The samples were sent to Dr Stoye. Dr Enlander has asked Dr Stoye about the samples but I don't know if he has ever had a reply. Dr Enlander's been trying to find out what the MRC did with them in the UK. He (Dr E) was the one who paid for them so has lost out financially here.

 

[eric_s]

well, eric, it's time to start that advocacy organization, hire a New York attorney, etc.

Yes, right, but i can't do this, it's people in the USA and the UK who can try to do something about what's happening in their countries. What i can do from here, i'm trying to do, in those countries i have some access to.

 

[WillowJ]

Yes, right, but i can't do this, it's people in the USA and the UK who can try to do something about what's happening in their countries. What i can do from here, i'm trying to do, in those countries i have some access to.

you don't think we need an international one? Americans should start a new one?

 

[eric_s]

I think this would probably be better possible on a national level. Because everything is different in each country and you need to know how things are in this specific country and work with people from there. At least that's what i think.
For example how could i work with US attorneys? I could never meet them in person. I could also never meet other US persons (the ones we want to protect/support or the ones we think are the problem).
A US person could go there and meet them, if the distance is not too big and health allows it. I would donate to so such an organisation, as far as it's possible for me, even if it's in the UK or US, but i don't think this could be international, as far as the staff is concerned. I might be wrong of course.

Here is part of an email i got from Liga SFC, the Catalan ME/CFS organisation (in Spain):

2. LEGAL
Several years ago, as you might remember, we, the Liga SFC, were one of the initiators of the Popular Legislative Initiative which gathered 140,000 signatures in Catalonia (only 50,000 were needed...population of Catalonia is 7 million) and it was voted unanimously by the Parlament as Resolution 203/VIII. It included all our demands: proper ME/CFS and FMS (fibromyalgia) services in specialized units, pediatricians, etc, etc. But the goverment manipulated this and instead of creating real units, the set up 16 rheumatologists teamed up with psychologists and called each one a "Specialized Hospital Unit". These are, in reality, "fibro-parkings", where anyone who is sick, whether they have ME/CFS, FMS or MCS, is diagnosed as FMS, medicated and given CBT.
The political strategy on the part of the then socialist goverment of saying that any Central Sensitivity Syndrome is actually Fibromialgia (FMS) is even more perverted and damaging than the British goverment's strategy of saying that ME/CFS is psychological or psychosomatic.

So...we are starting a class action suit with the most prestigious law firm in Spain that has, for the past 30 years, won major class actions in favour of mostly workers (one of their best know cases was a class action suit of 2000 telephone company workers which they won). They have a lot of experience with ME/CFS, MCS and FMS cases with much success. As health services are run by each Autonomy, this first class action suit will be against the Catalan goverment. We hope that this might inspire/lead to similar actions in the rest of Spain and maybe, maybe, it could eventually be done in Europe? Anyone interested in this idea?

We are now working with the law firm in informing and educationg people with ME/CFS about this class action and starting a press campaign about it.

So they are working with a law firm. I think that's a good concept. I think every big ME/CFS org should have a law firm that they are in touch with. Then they can refer people who need a lawyer to that law firm and the law firm will probably be able to specialize in ME/CFS a bit and gain experience. To me this sounds like a good idea.

In a case like Dr. Kerr's or Dr. Natelson's (don't really know what happened there, though) i think probably support by an as large number of citizens as possible might be just as important as what a lawyer can do. I know it's very hard to do, because most people are hardly well enough, but i think it would take people protesting and making a lot of noise. In petitions, emails, letters, letters in newspapers and demostrations in front of that university/hospital, if possible. And if it's possible to do something about it legally, even better.

 

[WillowJ]

the Spain group's tactic looks very encouraging. good for you for doing this kind of research.

by "medicated", do they mean with FM-appropriate meds like gabapentin/neurontin, or do they mean with sedating psychiatric medicines and keep in psychiatric hospitals? the latter case would be very disturbing

 

[Nielk]

NielK, if you do a search for Dr Enlander's posts you should find a reference to the lost samples. Dr Kerr lost his laboratory when he lost his job (the St George's hospital one). The samples were sent to Dr Stoye. Dr Enlander has asked Dr Stoye about the samples but I don't know if he has ever had a reply. Dr Enlander's been trying to find out what the MRC did with them in the UK. He (Dr E) was the one who paid for them so has lost out financially here.

Yes, I did find the post. Thank you. Interesting that I didn't hear about this before. I had assumed that Dr. Kerr tested ALL the samples. There is such a web here that one can't know for sure what's REALLY going on. It's true though about Dr. Enlander paying for taking and sending over the samples. They never charged me anything. It's not the first time that Dr.Enlander has used his private funds to do research for CFS. He is a most ethical and moral individual.

 

[Recovery Soon]

It's not the first time that Dr.Enlander has used his private funds to do research for CFS. He is a most ethical and moral individual.

Hear Hear. Dr. Enlander is the best. (And so are Laura and Michelle).

My blood was in that sample too. First I'm hearing of this.

 

[eric_s]

the Spain group's tactic looks very encouraging. good for you for doing this kind of research.

by "medicated", do they mean with FM-appropriate meds like gabapentin/neurontin, or do they mean with sedating psychiatric medicines and keep in psychiatric hospitals? the latter case would be very disturbing

I don't really know what they give them, but i guess it's mostly painkillers. I don't think the situation there is that people are treated against their will, from what i know. The problem seems to be more that they just put them on an endless waiting pattern, diagnosing them as FM and giving them some medication to try to relieve symtpoms, instead of properly diagnosing ME/CFS and doing more research to try to really be able to help. This is how i understood it.

In about 4 weeks i will go to a meeting here in Switzerland and i will talk to the people there about working with a law firm.

 

[WillowJ]

I don't really know what they give them, but i guess it's mostly painkillers. I don't think the situation there is that people are treated against their will, from what i know. The problem seems to be more that they just put them on an endless waiting pattern, diagnosing them as FM and giving them some medication to try to relieve symtpoms, instead of properly diagnosing ME/CFS and doing more research to try to really be able to help. This is how i understood it.

In about 4 weeks i will go to a meeting here in Switzerland and i will talk to the people there about working with a law firm.

FM meds is better treatment than many people get. Still, research would be better and we all need to be seeing neurologists and immunologists who actually know about the research which has been done so far, or better yet, cellular medicine specialists (if there's not such a thing, there should be).

Good work, Eric. I or someone here, needs to find the teeth in advocacy here in America.

 

[eric_s]

Thanks, Willow. You know, over here (Switzerland) one of the problems is that authorities don't even accept ME/CFS as a condition than can render you unable to work. So i guess there is a lot of work for lawyers. I hope if a firm were to specialize in these cases we might have more success. And probably it would also take demonstrations in front of the court house. The law is ok, but they don't apply it correctly in our case.

 

[August59]

You might checke with the "Patient Advocant" as his daughter had blood drawn for this study the Dr. Kerr was involved in. I think the patient advocate cornered "Poppin Fresh" Stoye at one of the bigger meetings and stoye was not able to answer any of his questions and seemed to be whipped up into a state of stutttering as his best answerers.

 

[eric_s]

Thanks for mentioning. I will see if i know any Brits i can forward this to, because i don't see how i could do anything about something that is happening over there.

 

[Bob]

For all of you Dr Enlander fans:
http://www.youtube.com/watch?v=M4Jj6S0_06A

 

[Sasha]

For all of you Dr Enlander fans:
http://www.youtube.com/watch?v=M4Jj6S0_06A

It's Llewellyn King again! What a lovely guy - maybe his interest is because his friend is sick with ME. We're really fortunate to have his involvement.

 

[eric_s]

Yes, he seems committed to help, that's very good.

 

[eric_s]

Couldn't this be broadcast in other English speaking countries as well? Does anybody know where it's currenty being broadcast? I hope the ME/CFS organisations in the UK will make it available through their websites.

 

[Bob]

It's Llewellyn King again! What a lovely guy - maybe his interest is because his friend is sick with ME. We're really fortunate to have his involvement.

Yes, he's great isn't he.

He's recently written one of the best short descriptions of ME that I've come across:

"For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.

According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope."

Taken from this article:
http://www.realclearscience.com/art...fatigue_syndrome_is_misunderstood_106242.html

 

[Bob]

Here's the second video:
http://www.youtube.com/watch?v=BM3ouwmb-bI

 

[Jemal]

Yes, he's great isn't he.

He's recently written one of the best short descriptions of ME that I've come across:

"For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.

According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope."

Taken from this article:
http://www.realclearscience.com/art...fatigue_syndrome_is_misunderstood_106242.html

The description is very good. It still makes me angry and sad when I read it and I have read it over a dozen times by now...