Cheney's Latest Newsletter

[shannah]

This is what Cheney is covering in his latest newsletter and some of his thoughts.
(Subscription required for full newsletter)


In this rather robust Newsletter, Dr. Cheney discusses five topics of emerging interest to CFS patients.

1) A naturally occurring glycoprotein known as GcMAF is described and its potential use in both cancer and viral infections is discussed. A nearly completed study out of Europe is poised to be published showing benefits in CFS patients using injectable GcMAF.

Can the naturally occurring glycoprotein known as GcMAF be the best available treatment for XMRV/MLV infection?

GcMAF is a naturally occurring yet potent activator of the immune system antigen processing cells known as Macrophages. This post discusses the nature of GcMAF including how it is derived and its potential utility in treating both cancer and retroviral infections. Studies in Europe are being completed which demonstrate the effectiveness of GcMAF in CFS patients and soon to be published.

2) The issue of using HIV anti-viral drugs in CFS patients infected with XMRV/MLV is reviewed.

Should anti-retroviral drugs used for HIV be used to treat CFS patients with XMRV?

In my opinion, these drugs must be used only in well designed studies and the sooner the better because many patients and their doctors are being persuaded to try them as they read the anecdotes on web blogs of CFS patients using RT inhibitors and integrase inhibitors. Anecdotal self-reports are very suspect in CFS due to spontaneous improvements and the longer term problems which are sure to come will not be evident for years. Some problems may also be sudden and dramatic, especially heart problems linked to ischemia.

3) Macaque monkeys infected with human XMRV/MLV reveals the life cycle and possible primary reservoirs of XMRV/MLV.

Monkey study sheds light on the lifecycle and potential reservoirs of XMRV
Presented at the 1st International XMRV conference held at the NIH in early September 2010 was an extraordinary study by a group connected to Abbott Labs that infected male and female macaques which are monkeys closely related to man with human XMRV to see what happens over time and where the virus ends up or concentrates itself.

4) Dr. Cheney's recent poster presentation at the NIH on XMRV/MLV in a CFS cohort is reviewed by a U-Tube partial presentation of this poster. Dr. Cheney offers constructive criticism of the U-Tube presentation.

Dr. Cheney’s poster presentation at an XMRV conference held at the NIH is reviewed by U-tube – are there misrepresentations?

A poster presentation by Dr. Cheney made at the 1st International XMRV meetings held at the NIH in early September, 2010 was partially summarized by a U-tube video (see http://www.youtube.com/watch?v=S3UwkdzBaro). While the video was in many respects very well done and brings needed attention to CFS and its link to XMRV, there are key misrepresentations made about the poster and what it actually said or implied. This post discusses in detail the good points and bad points of this U-tube presentation which Dr. Cheney knew nothing about and had no hand in it.


5) An overview of stem cell results in almost 25 CFS patients spanning 20 months is presented.

Review of stem cell therapy results as of September 2010

We are now almost 20 months out from the treatment with afterbirth derived stem cells of almost 25 CFS patients with 18 patients now out at least a year. There has clearly been dramatic success, especially in those under 35 years of age but a clearer picture is now emerging. Any success for those over sixty has been meager at best except perhaps briefly. More importantly, all stem cell responders which has been the great majority to date, are subject to varying degrees of regression, especially if they did not commit to our best anti-viral regime supported by all that we bring to bear in terms of broader CFS therapeutic support and recommended lifestyle changes in this practice. The majority of regressions are fortunately not back to baseline and most are holding above baseline and some are holding well above baseline. We have several ideas going forward and this important Newsletter post explores many of them


http://www.cheneyresearch.com/sign-...est-available-treatment-for-xmrvmlv-infection

 

[Sushi]

Is anyone out there who receives this newsletter willing to paraphrase the gist of some of these articles. Seems like there is a lot of good info in there that could make a difference in our treatment decisions.

Thanks,
Sushi

 

[mojoey]

Considering the $500 annual subscription fee, I wonder if anyone would be willing to freely part with that info.

If not, perhaps a group subscription might be something to look into to dilute the cost?

 

[serg1942]

Hey, this is annoying and unfair! I cannot understand that a doctor makes so much money out of the pocket of people so sick...I'm sorry, but cannot understand it...

Joey, sign me in for the group subscription!

Sergio

 

[lcollins64]

serg1942,
I'm with you. I cannot understand why there is a charge for this information. As a person on disability that gets an amount that barely and not usually covers basic expenses, how in the world can we afford to pay for information that should be readily available to us..the ones that need it most. Same with doctors that do not accept Medicare. If we are on Soc. Sec. Disability and have Medicare, we definitely don't have the funds to give for an appt. with a highly acclaimed doctor, Lord knows, I wish I did! Point being: give the information to the people that need it most, us, the ones that are suffering from this horrendous crap!
Lane

 

[dipic]

Wonderful! Literally days after we cancelled our subscription due to a lack of update for months from the Cheney newsletter. Here's hoping most, if not all of this info gets leaked to other parts of the internet.

serg1942,
I'm with you. I cannot understand why there is a charge for this information. As a person on disability that gets an amount that barely and not usually covers basic expenses, how in the world can we afford to pay for information that should be readily available to us..the ones that need it most. Same with doctors that do not accept Medicare. If we are on Soc. Sec. Disability and have Medicare, we definitely don't have the funds to give for an appt. with a highly acclaimed doctor, Lord knows, I wish I did! Point being: give the information to the people that need it most, us, the ones that are suffering from this horrendous crap!
Lane

I am not entirely sure how I feel about this. Basically, the philosophy goes is that, those who ARE able to afford Dr.Cheney's services (and do not be confused... there ARE people with ME/CFS who can, clearly, or else he would not be in business... also, Whittemores, anyone?) are actually potentially (even likely, in my opinion) benefiting ALL of us. How, you ask? Cheney is literally on the cutting edge. Much (if not the majority) of what he makes goes back INTO his clinic and research, which we will all be able to benefit from eventually (especially if he ever gets around to publishing any of his work. >_>) I have seen patients of his justify it by the same reasons: they believe that since they are able to afford his services, they are doing a greater a good. Not having to deal with insurance or having to see fifty million people who would want to see him if his fees were more reasonable allows him to continue his research at ridiculous speed.

Capitalism in it's purest form. Whether you agree with this or not is up to you. Again, I'm not entirely sure how I feel about it (I can tell you I'm not happy about the newsletter fiasco, if you hadn't noticed), but I do understand the philosophy behind this. I guess, personally, I'm mostly okay with this. It is not as if every doctor does the same thing. And do remember, Cheney is a scientist and researcher before he is a doctor and clinician. I just hope that good DOES come out of this... and I believe it will. While I may not agree with some of Cheney's current or previous theories or hypotheses, I truly believe he is an absolutely brilliant man who has done good (along with some admittedly bad) science for CFS. If it were not for him would people be taking chances, going for stem cell therapy for this illness in Panama? Would I, personally, have gone if it weren't for him sort of "spear heading" this endeavor? Doubt it.

Anyway, rather than ramble on about something with my half-burnt brain, I would refer anyone and everyone to read Rich Van Konynenburg's recent and much better explanation of this:
http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1402597
(about six posts down)

There was another excellent, intelligently written post from a patient of Cheney's explaining his reasoning and why he believes it's completely acceptable but I was unable to find the post after a good amount of time searching. Knowing that forum though, it was probably deleted by some halfwit mod.

We are always so quick to jump to cynical reasoning for an issue like this (and understandably so, with morons like Tietlebaum who truly is only in the "CFS biz" these days to turn a buck, it seems) but as far as I know, Dr.Cheney isn't funneling money into some offshore account or sailing on a million dollar yacht in his spare time (not that he has much of it between his work.) The man has for MANY years and continues to this day work very hard towards understanding and hopefully finding effective treatments or even a cure for our illness. And that, whether you agree with his financial philosophies or not, I think is something to truly be admired and appreciated by all of us sick with this miserable dd.

 

[ukxmrv]

I've been hoping for 20 years that one day I'll have enough money to see Dr Cheney and be well enough to travel and do so.

There were big gaps over that time when we didn't hear from him on the internet or through patient newsletters/reports.

Big gaps when his patients (like Carol Sieverling) didn't write internet reports of his theories and thoughts. I've relied on these over the decades to help make my next treatment decision (as I've had little aces to medical help).

There is no way I would criticise Dr Cheney on providing a service for a fee. I think we are so lucky to still have him alive and helping us in any way that he can.

I can't even afford to get the full newsletter. If anyone who does get this would like to put up a precis of the contents I will be very grateful.

 

[calzy]

Im just gonna say it...He pisses me off with this s@*t...I spent 50k, my life savings at his office...he did some great things for me, but I think he looses his credibility with this $$$$$$ driven practice.

 

[dipic]

Im just gonna say it...He pisses me off with this s@*t...I spent 50k, my life savings at his office...he did some great things for me, but I think he looses his credibility with this $$$$$$ driven practice.

Can you go into further detail as to why you feel this way? Why would you spend your life savings to go to his practice... then say he loses all credibility because his practice is "[money] driven"? No offense, but that seems sort of silly and doesn't make a whole lot of sense to me.

I'm not a fan of the whole paid subscription for blog posts, as I've already mentioned, but as far as his clinic is concerned, no one is forcing you (or anyone else) to go. You decided to spend that money for his services... and you said you got them, so...?

Again, I'm just a little confused by your post.

 

[grant107]

I will not pay him for his newsletter. I find it shocking that he has the audacity to charge $49 a month. $10 or $15, maybe. I will eventually get the information later because if news is pertinent to our cause it will find its way on to the internet. As for research I will donate what I can afford to people who I think are doing the most for this illness.

 

[Cort]

Hey, this is annoying and unfair! I cannot understand that a doctor makes so much money out of the pocket of people so sick...I'm sorry, but cannot understand it...

Joey, sign me in for the group subscription!

Sergio

It's just too bad. I was going to sneak in and get a month subscription and pick everything over the past year but I notice that's gone - now you have to do three months. There will always be the money thing with Cheney it seems. I still remember that $1300 phone call I had with him; some things stick with you forever!

 

[Cort]

Cheney charges what, somewhere around $650/hour? When I saw him 10 years ago he was working 4 day weeks.

When I was late with one payment his bulldog phoned me and told me I owed them some money. I said OK let me call you back in 30 minutes and she said "No". I said what do you mean 'No'? and we got into it and then I hung up on her. Talk about hard-nosed!

This has nothing to do with him being a good doctor or not. From what I've heard Peterson bends over backwards to help his patients with costs.........Hilary Johnson points out in Osler's Web that he abruptly left Dr. Peterson in the middle of the Incline Village imbroglio and one of the reasons was money and it took Peterson quite a while to get over that.....

Of course no one denies he's not a VERY dedicated doctor and that is, of course, the main thing. Although he's sharing information for cost - still he is getting it out and that's a very good thing. Of course its going to rankle a bit for those of us who can't afford him.

 

[leaves]

Can you go into further detail as to why you feel this way? Why would you spend your life savings to go to his practice... then say he loses all credibility because his practice is "[money] driven"? No offense, but that seems sort of silly and doesn't make a whole lot of sense to me.

I'm not a fan of the whole paid subscription for blog posts, as I've already mentioned, but as far as his clinic is concerned, no one is forcing you (or anyone else) to go. You decided to spend that money for his services... and you said you got them, so...?

Again, I'm just a little confused by your post.

I guess from a capitalistic perspective it makes sense; we are desperate so he can charge whatever he wants, talking about inelastic demand here...
I just wished he published his stuff in peer reviewed journals

 

[dipic]

It's just too bad. I was going to sneak in and get a month subscription and pick everything over the past year but I notice that's gone - now you have to do three months.

It's too bad I didn't save each and every one of his posts into word documents and place them into neatly organized folders on my hard drive when I had a subscription. :innocent1: :Retro wink:

I guess from a capitalistic perspective it makes sense; we are desperate so he can charge whatever he wants, talking about inelastic demand here...
I just wished he published his stuff in peer reviewed journals

He seriously needs to get on that stat. I've heard that he was going to begin to finally start doing that but we'll see... sure would be nice.

 

[lcollins64]

Hey depic,
I didn't mean to sound as if I didn't appreciate Dr. Cheney and his brilliance at all. And I'm sure we will get this information trickled down to us through others that are able to see him. It's just when you get an email about his newsletter and then hit "get more info" and it comes up with subscribe....it just irks me. But, no doubt I respect him and am so grateful for all his hard work. Just envious I guess that I cannot afford to see him. So, no offense!
Oh my, do I understand what you mean about a half-burnt brain! I totally relate!

 

[dannybex]

This has nothing to do with him being a good doctor or not. From what I've heard Peterson bends over backwards to help his patients with costs.........Hilary Johnson points out in Osler's Web that he abruptly left Dr. Peterson in the middle of the Incline Village imbroglio and one of the reasons was money and it took Peterson quite a while to get over that.....

Of course no one denies he's not a VERY dedicated doctor and that is, of course, the main thing. Although he's sharing information for cost - still he is getting it out and that's a very good thing. Of course its going to rankle a bit for those of us who can't afford him.

As it should. I just don't understand how he justifies his fees. Peterson seems to disperse information and treat patients, yet doesn't charge sky-high rates, nor does Klimas, who by the way has a much better track record than Cheney.

If, as Dipic and Rich suggest, he's charging these exorbitant fees to help fund research, then patients should be told that up front, and yes, he should have some studies published in the last 10 years or so up on Pubmed.

$1300 for a phone call?

Sheesh.

 

[serg1942]

Hi guys,

This is a question about whether the end justifies the means...We could be discussing this for years, and yet, we would never find a "winner"...

Personally, I do think he's a brilliant doctor, but, and this is not incompatible, I think his avarice is unfair and what makes it worse is that, it seems to me he is rejoicing at it---You can ask money for your work. This can be understandable, but you cannot (morally speaking) show the summary of this Newsletter to extremely sick people, who rely on reading this stuff to have a light of hope, and then tell them that they will have to pay for that. In other words, you don't deserve to have hope if you can't afford it. This is mean.

Again, just my opinion, equally valid to everyone else's, and repeat: I do admire his intelligence and devotion for his work (I wouldn't say for his patients though), and I also do think we are lucky to have someone doing his job. But I cannot avoid comparing him with other scientists who are actually devoting their entire life for all of us, and for wich the money is just something necessary to continuing helping us, and not the opposite, i.e, being the patients a very lucrative source of money...

(I express openly my thoughts, as I don't and won't have money to visit him. Otherwise I should refrain for speaking...This is very sad, isn't it?)

Saluditos,
Sergio

 

[slayadragon]

2) The issue of using HIV anti-viral drugs in CFS patients infected with XMRV/MLV is reviewed.

Should anti-retroviral drugs used for HIV be used to treat CFS patients with XMRV?

In my opinion, these drugs must be used only in well designed studies and the sooner the better because many patients and their doctors are being persuaded to try them as they read the anecdotes on web blogs of CFS patients using RT inhibitors and integrase inhibitors. Anecdotal self-reports are very suspect in CFS due to spontaneous improvements and the longer term problems which are sure to come will not be evident for years. Some problems may also be sudden and dramatic, especially heart problems linked to ischemia.


http://www.cheneyresearch.com/sign-...est-available-treatment-for-xmrvmlv-infection

I don't especially care about whether Cheney requires money to read what he has written.

But this part really troubles me.

He's suggesting here not that studies should be done on drugs to address this illness because we need to find out whether they work, but because patients are trying them as a result of anecdotes on Internet blogs.

He furthermore suggests that the people who are writing the blogs are perhaps just experiencing "spontaneous improvements" and thus misleading others.

His final point is that we don't know the long-run implications of these drugs.

I object to this on a variety of points.

The reason we need trials of these drugs is not so that some people won't try them, but so that we can learn whether they work and get insurance coverage and broader prescriptions of them if they do work.

People are really really SICK. He knows that. He has been seeing them for 26 years, since Erik Johnson walked into his office in 1984. During that time, despite his hard work, almost none of the patients he has treated has made much progress. If they recover enough to go back to work - with difficulty in any sort of job - even for a short period of time, he calls that a "functional cure" and trots it out to people as a big success story.

His not having gotten folks better is not a failing on his part. These are tough patients. It's a tough disease. Much tougher than most, for sure.

If Jamie Deckoff-Jones and her daughter say that they were really sick for years with this disease and give specifics, and they furthermore say that they are much better, and they furthermore demonstrate through deeds that they are better (taking college classes, driving comfortably across country to attend a conference), who is he to say that it's "anecdotal"? He uses anecdotal stories all the time to demonstrate the success of his own methods.

His suggesting that patients are being misled by these stories is an insult to patients' intelligence. Individuals suffering from this disease are not stupid. They - we, when I was actively sick - certainly have lost a lot of their cognitive skills, in terms of ability to process information and focus on spatial tasks and other specific issues. But I've yet to meet anyone, in person or online, that demonstrated that they were not able to make reasoned judgments and decisions that weighed the pros and cons of different sorts of action. People with this disease may be impaired, but they're not senile or mentally retarded or uneducated or gullible. We don't need to be protected from knowing about whether various courses of action have worked. We need all the knowledge that we can get.

The idea of "anecdotal" has been keeping people from knowing about who's recovered from this disease for 24 years now. When Cheney and Peterson got one patient during the Incline Village epidemic to improve a little due to something that they tried, they told everybody about it and tried the treatment on a bunch more people. When Erik told them that he was doing a whole lot better as a result of staying away from the mold in his house, they patted him on the head (figuratively) and showed him the door (literally).

Clearly this had nothing to do with the fact that Erik was a hang gliding instructor rather than a medical professional, because the response is the same when a medical doctor says that she also has improved from a treatment that he didn't suggest.

CFS patients do not need to be shielded from information. They need to learn what works for other people, so that they can evaluate their options and make the decisions that they believe are appropriate based on ALL the information - anecdotal or not - that is currently available.

On the other hand, if he believes that these drugs may have negative long-term consequences for people, then he should be bringing that up. In fact, if he thinks that, it's something that I think he has the moral responsibility to bring up.....not just in a newsletter that patients are not allowed to share with other people, not on a fee website, but in a way so that people can access the information freely.

If he wants to hide information about the magic buffalo creams, then fine. But if he really thinks this stuff is so dangerous, then he should tell everybody - not just some people - clearly why.

All in all, I suggest that somebody buy a subscription to the information on the web site and then repost it someplace where people can read it. Is he really going to take CFS patients to court for sharing the information that he puts on his website? Is that really the kind of image he wants to get across in a community this small?

No way in hell. No way in hell. As a former PR and marketing consultant.....no way in hell.

People are sick from this disease. They really are SICK. And you know what? It's possible to get better. And life is pretty damned good when you get better too.

Keeping people from getting better because the information is "anecdotal" is unconscionable.

Best, Lisa

 

[xrayspex]

magic buffalo cream--haha
that stuff did nothin for me

 

[grant107]

Lisa, I agree with you completely and you say it so well.