Re: The spin by other doctors continue.

November 4, 2009

weren't those cfs patients he was discussing that had fibro and thyroid

problems? it's pretty common that they do.

>

> It's amazing to me how CFS researcher/doctors are reacting to the XMRV news.

For example, take Teitelbaum's article that just popped up on Google news:

>

http://www.psychologytoday.com/blog/complementary-medicine/200911/some-perspecti\

ve-the-xmrv-virus

>

> " Our research shows that 91% of patients treated with the SHINE protocol

improve, and many get well. Remember that the " I " in SHINE stands for Infections

— with multiple treatments that help treat viral infections (such as XMRV)

included. "

>

> Wait a minute. Why not state how many actually got " well " ?

>

> And if you follow the link for " Our research " , you get an article about his

treatment of patients from 1991-1993. Are you kidding me? Doesn't he have

anything more recent than that?

>

> And in that " study " , hestates that " 46 patients had at least three or more

contributing problems. Fibromyalgia was present in 44 patients. Overt or

subclinical hypothyroidism and hypoadrenalism were suspected in thirty and 40

patients respectively. " Oh, wait. They many of them had untreated hormonal

problems, among other things. Oops! How can one deduce from those patients,

how his treatment works for people with CFS??

>

> I'm sure he's helped a lot of people, but it's hard to discount the

possibility that 95% of people CFS have been exposed to a retrovirus (not just

any plain virus), that only 4% of the population has been exposed to. Most

other viruses that have been mentioned with regard to CFS, such as HHV6 and EBV,

are viruses that a large majority of the US population has been exposed to.

>

> He may be correct that knowing about the XMRV may not necessary lead to any

new treatments but we don't know that. But it's amazing to me how many people

who treat CFS, LIKE HIM, are using this discovery as a way to publicize their

own treatments. Or perhaps I shouldn't be SO amazed, that I'm simply JUST

naive.

>

> - Mark

>

November 4, 2009

ashok gupta has put quite a spin on it! lol

Â

http://www.care2.com/c2c/groups/disc.html?gpp=8992 & pst=1124906

From: whoopandado <mrl@...>

Subject: The spin by other doctors continue.

Received: Wednesday, November 4, 2009, 2:39 PM

Â

It's amazing to me how CFS researcher/doctors are reacting to the XMRV news. For

example, take Teitelbaum's article that just popped up on Google news:

http://www.psycholo gytoday.com/ blog/complementa ry-medicine/ 200911/some-

perspective- the-xmrv- virus

" Our research shows that 91% of patients treated with the SHINE protocol

improve, and many get well. Remember that the " I " in SHINE stands for Infections

â€” with multiple treatments that help treat viral infections (such as XMRV)

included. "

Wait a minute. Why not state how many actually got " well " ?

And if you follow the link for " Our research " , you get an article about his

treatment of patients from 1991-1993. Are you kidding me? Doesn't he have

anything more recent than that?

And in that " study " , hestates that " 46 patients had at least three or more

contributing problems. Fibromyalgia was present in 44 patients. Overt or

subclinical hypothyroidism and hypoadrenalism were suspected in thirty and 40

patients respectively. " Oh, wait. They many of them had untreated hormonal

problems, among other things. Oops! How can one deduce from those patients, how

his treatment works for people with CFS??

I'm sure he's helped a lot of people, but it's hard to discount the possibility

that 95% of people CFS have been exposed to a retrovirus (not just any plain

virus), that only 4% of the population has been exposed to. Most other viruses

that have been mentioned with regard to CFS, such as HHV6 and EBV, are viruses

that a large majority of the US population has been exposed to.

He may be correct that knowing about the XMRV may not necessary lead to any new

treatments but we don't know that. But it's amazing to me how many people who

treat CFS, LIKE HIM, are using this discovery as a way to publicize their own

treatments. Or perhaps I shouldn't be SO amazed, that I'm simply JUST naive.

- Mark

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November 4, 2009

There's a comments section there. I stated my opinion pretty frankly. Of course

XMRV might not be the cause, though that is unlikely; what's absolute folly is

pretending that it is no different than other pathogen findings with a

prevalence under 98%. Ninety eight percent prevalence in CFS when few normals

have it strongly suggests causality. I am 80% confident, conservatively, and

confidence below 50% is unreasonable.

> He may be correct that knowing about the XMRV may not necessary lead to any

new treatments but we don't know that. But it's amazing to me how many people

who treat CFS, LIKE HIM, are using this discovery as a way to publicize their

own treatments. Or perhaps I shouldn't be SO amazed, that I'm simply JUST

naive.

November 5, 2009

eric...so far, i have not heard you sound so positive about any discovery

regarding CFS....the fact that you think this might be " it " ..says a lot! lol

From: hodolog1ca <usenethod@...>

Subject: Re: The spin by other doctors continue.

Received: Wednesday, November 4, 2009, 5:40 PM

Â

There's a comments section there. I stated my opinion pretty frankly. Of course

XMRV might not be the cause, though that is unlikely; what's absolute folly is

pretending that it is no different than other pathogen findings with a

prevalence under 98%. Ninety eight percent prevalence in CFS when few normals

have it strongly suggests causality. I am 80% confident, conservatively, and

confidence below 50% is unreasonable.

> He may be correct that knowing about the XMRV may not necessary lead to any

new treatments but we don't know that. But it's amazing to me how many people

who treat CFS, LIKE HIM, are using this discovery as a way to publicize their

own treatments. Or perhaps I shouldn't be SO amazed, that I'm simply JUST naive.

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November 5, 2009

I have spoken personally with Judy Mikovitz, Dr. and Dr. Cheney and

I can tell you that they are 100% certain that XMRV is the cause.

November 5, 2009

> Whilst I'm 100% agreed on the comments made on Teitelbaum's article, I

> don't think we should be too cynical of other CFS docs for taking an

> interest in the XMRV. - Indeed - in the light of such as significant

> development, I think I'd be far more worried if they */hadn't /*got a

> view.

>

> XMRV may be the most exciting news we've had in years - but the

> pathogenosis of ME/CFS remains far from 'sewn up'. To reach that

> point - we need the scientific interest and debate to intensify. - So

> I welcome these discordant views..but challenge the scientific

> community to go substantiate them.

>

> Furthermore - I remain sceptical that Mikovits' staggering percentages

> will prove indicative of the broader CFS population. She will have

> chosen her study groups very carefully (and rightfully so - as a

> result she's achieved the media coup of the century for which I'm

> immensely grateful). However, I fear that the most likely outcome is

> that rather less than 95% of us will test positive for XMRV

> antibodies. I don't think I've seen anything with clear details of

> her selection criteria - but I get the impression the WPI focus

> somewhat more on the CFS outbreaks than the sporadic cases - whereas I

> suspect the latter group probably constitutes a much larger proportion

> of the CFS population.

>

> That means we may find that a group of us end up being diagnosed with

> XAND, and a group of us end up left with CFS. The former will get

> lots of attention and research funding, and probably, with time, some

> effective treatments. The outlook for the latter (who may be just as

> ill) is rather more uncertain. If we're lucky, maybe the increased

> intensity of research may result in some spin-off findings which

> benefit the non-XAND group. But lessons from history suggest to me it

> is more likely that an XMRV-negative diagnosis will be perceived as

> evidence that there is no biomedical basis for the symptoms......A

> very sad state indeed.

>

> So - I wish to encourage Chia, Gupta et al to continue their good work

> - to ensure that those of us left with 'just CFS' are not forgotten. -

> Maybe one day their work will explain another 'chunk' of the CFS

> community.

>

> More specifically on the subject of Gupta - I had been toying with the

> idea of starting his programme for sometime now - and I have to say

> that the XMRV announcement only makes me more keen to do so. Just a

> few weeks ago one of 's patients posted on this list (sorry, I

> forget the name), summarising a recent consultation in which he

> explained how & his colleagues were becoming less convinced

> that ANS dysfunction was secondary to immune dysfunction - due to the

> fact XMRV has a cortisol receptor.

>

> I know very well that my symptom severity is highly sensitive to

> stress - which to me says the ANS has *got *to play a role in things.

> Initially when I heard about XMRV, I felt somewhat powerless - the

> virus was damaging the ANS, and hence there was nothing I could do.

> But now I'm seeing it rather differently. - Whether or not I do have

> XMRV, I reckon calming - and reconfiguring my ANS has got to be a step

> in the right direction.....

>

> Hence I'm planning to pay up my £95 and give 'Amygdala Retraining' a

> go.....At the least - it's a darn sight cheaper than most of the

> quacks out there!

>

> "

>

November 5, 2009

Yes, I got the same run-around yesterday when I went for my monthly

appointment at the FFC in Portland.

I was hoping to be able to have an open discussion with my dr. about

the XMRV but on the contrary to his 'normal' open attitude I got the

corporate blah blah blah. That I shouldn't get my hopes up and that

according dr.T's SHINE 91% of the people improved and that XMRV

probably will turn out to be just another virus along my EBV, CMV,

Lyme, Parvo, the complete Herpes family etc. Which would be good

according to corporate message because they were already treating the

infections.

It's unfortunate that I fall into the 9% category of the people who do

not improve on the SHINE protocol and thus will not be helped with

further treatment on that road. Prescribing me more hormones and more

thyroid stuff while I try to make them understand that dr. Mikovits

said that hormones and especially cortisol turns on the XMRV. It was

completely clear to me why I always felt so horrible after taking

additional hormones, why my cortisol was so low, it's sad that

corporate guidelines prevent them from accepting this fact and

treating you accordingly.

I have always been so happy with them as my physicians and this was a

complete let down, I felt very sad and disappointed like I lost a good

family member, someone I trusted completely. And I'm left with the

question now what? Do I go on the way he wants me to even though I

have my doubts about what it is doing to my body.

Thankfully he did fully support me getting tested for the XMRV and has

ordered the test for me. So we'll see what comes out of it, maybe he's

just on the fence about it and trying to cover his *ss by holding on

to corporate guidelines.

A previous physician who worked at the FFC in Portland I once asked

what happened to those 9% patients who didn't get well or improved. He

bluntly stated that that were people who didn't want to get well,

being ill suited a purpose to them and they would probably never

improve because something was holding them back. *bleh* needless to

say that didn't sit well with me.

--

Portland, OR

November 6, 2009

say, since mikovitz says hormones contraindicated does that mean no dhea either?

I am not taking it but was going to experiment with minute dose later as Dr

Cheney has rec'd it in past to folks. I havent had good luck with even small

amounts of bioidentical hormones in past so dont mess with them much.

>

> Yes, I got the same run-around yesterday when I went for my monthly

> appointment at the FFC in Portland.

>

> I was hoping to be able to have an open discussion with my dr. about

> the XMRV but on the contrary to his 'normal' open attitude I got the

> corporate blah blah blah. That I shouldn't get my hopes up and that

> according dr.T's SHINE 91% of the people improved and that XMRV

> probably will turn out to be just another virus along my EBV, CMV,

> Lyme, Parvo, the complete Herpes family etc. Which would be good

> according to corporate message because they were already treating the

> infections.

>

> It's unfortunate that I fall into the 9% category of the people who do

> not improve on the SHINE protocol and thus will not be helped with

> further treatment on that road. Prescribing me more hormones and more

> thyroid stuff while I try to make them understand that dr. Mikovits

> said that hormones and especially cortisol turns on the XMRV. It was

> completely clear to me why I always felt so horrible after taking

> additional hormones, why my cortisol was so low, it's sad that

> corporate guidelines prevent them from accepting this fact and

> treating you accordingly.

>

> I have always been so happy with them as my physicians and this was a

> complete let down, I felt very sad and disappointed like I lost a good

> family member, someone I trusted completely. And I'm left with the

> question now what? Do I go on the way he wants me to even though I

> have my doubts about what it is doing to my body.

>

> Thankfully he did fully support me getting tested for the XMRV and has

> ordered the test for me. So we'll see what comes out of it, maybe he's

> just on the fence about it and trying to cover his *ss by holding on

> to corporate guidelines.

>

> A previous physician who worked at the FFC in Portland I once asked

> what happened to those 9% patients who didn't get well or improved. He

> bluntly stated that that were people who didn't want to get well,

> being ill suited a purpose to them and they would probably never

> improve because something was holding them back. *bleh* needless to

> say that didn't sit well with me.

>

> --

>

> Portland, OR

>

November 6, 2009

, I guess I am not surprised...XMRV is going to put a lot of doctors

and their precious patents out of commission.

As A. Whittemore said, having a retrovirus actively reproducing in a human is

NOT a normal finding (unlike perhaps herpes viruses).

Sue

From: Tink <tink.belle@...>

Subject: Re: The spin by other doctors continue.

Received: Thursday, November 5, 2009, 6:53 PM