Article: Looking Forward: Dr. Peterson on ME/CFS Research, Treatment Options and Hope for the Future

Comments

Thinking about it all further, I suppose I might be being a bit hypocritical here...
I stay away from all the negativity myself, because it bothers me, tremendously...
I really hate any personal attacks, and any spiteful and unreasonable negativity...
And I tend to challenge it whenever I see that sort of behaviour on the forums.

And because I avoid it, and don't generally see so much of the behaviour that is being discussed here, then I might not have the full picture, so I may well be down-playing the problem.

If this sort of patient behaviour really bothers people, then I suppose it is right that we have this discussion, and get it out into the open.
Patient 'advocates' should not be above criticism.

But it does really bother me when I see patients being 'blamed'... It really does...
When I see 'blame' being apportioned, then all I can see is an injustice, and that makes me react and defend patients.
Maybe I am being over-sensitive... I don't know.

I didn't have much sympathy for McClure because of the insensitive way she presented herself, and the way her study only took 4 weeks to categorically determine that XMRV does not exist (in collaboration with Wessely.)
But, yes, when the attacks are widespread, including attacks on Petterson, then I must agree that there is a problem.

There's two things I question though, for which i genuinely don't know the answer:
1. If we were all perfect patients, would the situation really be any better for us?
2. Does the bad behaviour of a few individuals really give the whole ME community a bad name?


Anyway, what we can all agree on is that we need to focus on what is constructive and productive for our community.
There's two things I question though, for which i genuinely don't know the answer:
1. If we were all perfect patients, would the situation really be any better for us?
2. Does the bad behaviour of a few individuals really give the whole ME community a bad name?
Thanks Bob I appreciate your reflections...I think those are great questions.

My guess is that the answer before XMRV would have been - not really. I think there has been so much negativity and unproductive behavior after XMRV that my guess is - probably to some extent.

I really love the second question because I really don't know. All I know is that in conversations with researchers and physicians the topic does come up now and it never did before. Dr. Peterson's comments on that topic were not prompted by any questions - he just blurted it out and it was something that obviously concerned him.

There was alot of heat around the Miller case that we didn't see since it was on the other Forums and blogs and I was told that Racaniello said he had never seen anything like the level of vitriol on his blog around XMRV. Maybe Racaniello is a good example - he got alot of 'heat' - and yet he is a member of the CAA's scientific advisory board - he stuck around.

So while there's concern about this issue - how much it will actually impact researchers decisions to study CFS is really an open question. My guess is that researchers do research in areas that they believe will reap dividends and if CFS is seen as an area they can explore and make a difference - then they will jump in. If CFS is a borderline opportunity for them its possible that some would back away if its perceived as a difficult area.
 
I guess what I have to say is this:

- Pathogens themselves don't always cause the damage directly, they can cause inflammation, give off toxins, or influence the host in such a way that they are susceptible to other damaging pathogens that actually cause the symptoms (think HIV causing low CD4, which then allows opportunistic infections which then cause symptoms).
- Its possible that whatever is the underlying agent that causes ME/CFS suppresses NK cell function in order to evade defeat by the immune system. Herpes viruses might get re-activated due to this as a byproduct of the NK cell function being low.

But, these are just my speculations. These are all good questions that need to be answered by research.
That sounds right to me. In HIV encephalitis ('HIV dementia'), for example, i think the current thinking is that most of the inflammation is not due to direct HIV infection of brain cells, but these type of more downstream effects.
 
justin....HAART that penetrates the CNS does seem to help HIV encephalitis though, and HIV encephalitis can occur even when HIV is undetectable in blood...so its probably a combination of HIV infection of cells and other factors.
 
One of our major goals - if not the goal - is to attract top-notch researchers into the field. Which ones of us would not want a diverse set of scientists all in one room debating and tearing down theories, building better ones and tearing them down again until they finally come up with something concrete and definitive! I want this I would pay big money for this!

So it completely blows my mind when some patients ridicule anything or anyone that doesn't fit neatly into their own current hypothesis. Since the cause and cure for ME/CFS is not known, wouldn't it be highly possible that the true answers will be something that is not yet understood by medical science today!!

Don't we need every scientist that we can get, digging at the cause of this illness and debating results with other scientists until they figure the cause and treatment?

Why are patients rude and mean-spirited to these very people that we need fighting for us. For example, just months ago, some patients were sending nasty emails to John Coffin, who said XMRV was dead but that he was not ruling out other pathogens. It's easy to see that he was right in hindsight - but there were actually patients who were not retrovirologists, virologists, or even scientists arguing that he was dead wrong and calling him every name in the book. Really??

So even before the BWG study came out and Dr. M still believed in XMRV, we as a patient population could have thanked Dr Coffin for his honest evaluation and asked if then he would at least work on finding other pathogens. We could have had a BIG ally. We could have been much further down the road with other pathogens then we are now. IMO, we continue to blow good opportunities like this because we insist that he must not want to find a cause for ME/CFS, he doesnt believe in it, or hes part of a conspiracy.

Not only does this discourage the researchers in question, but also many others who are on the side-lines that we will never know about, because they do not want the same treatment. To work against ones own well-being for the sake of screaming the loudest on a forum is ill-logical behavior that gives Wessleys camp more ammunition and makes it that much harder for the rest of us.
I it does seem to me that less than a half dozen people (out of 17M) post a lot and seem to 'go too far' sometimes in their criticisms. If I were in charge :scared: I would end this practice! :D I think that energy would better be devoted entirely to taking on the real clear-cut villians- Wessely, etc- where being very aggressive is appropriate and prudent.

i think those behaviors hurt us to a certain extent, but i don't agree with the extent to which you think they hurt so much. The tiny funding and the fact that it often goes to useless or anti-science studies, is the real problem (along with lies from Wessely et al, CDC etc) of why there is so little bona fide research. there are and have always been many more real scientists willing to work on ME than there have been funds. If the funds ballooned up like they did in AIDS, the real scientists would come in droves even if there are some activists they feel go too far, as was the case in AIDS.

I think the chance John Coffin would be helping out doing other ME studies if we treated him better are about zero (barring an increase in funding).
 
These small number of people, who i think sometimes overstep also spend a lot of energy dissecting the science so they are really informed (though they may be wrong on some things- very hard for me to evaluate though since i don't understand the science).

They also do a relatively huge amount of other advocacy which does help us, taking on the UK charlatans, for example. So I think overall, these people contribute to helping the cause of pwME.

I don't mind people saying what they believe about this activism. But i really do urge people to spend more time contributing to positive activism (which should be aggressive) against the clear-cut evil oppressors. Some of the people here do already, but some people who criticize i don't think do a lot of activism. with appropriate activism we can 'show a better way' while doing a tremendous amount of good.

Bob- I think we all agree we need and have needed for decades an effective patient advocacy org. I encourage everyone to join existing orgs and do advocacy or start your own efforts!
 
The Central Locus

Dr. Peterson has a strong focus on pathogens but does not believe CFS is tied to a specific virus or even necessarily a pathogen. While the disorder is often clearly initiated by a bug... its clear that ME/CFS is not tied to any one bug.or even a bug.
Cort, this is confusing. in the first sentence you say Dr. P doesn't think ME is "necessarily" tied to a pathogen, implying that it's possible. Then you say he thinks it's "clear that ME/CFS is not tied to... a bug."

Pls clarify which view he really holds. I would think the first, since the second is so extreme and seems unsupported by the science to me.
 
Cort

In case you didn't know....Comments and questions are unsubmitttable to my story Drivng Miss Daisy. hmmmmm...conspiracy theory?:confused:
:D
 
if CFS is contagious, which it IS (suhadolnik added blood from a CFS patient to healthy blood and the disease spread. he watched this happen)...it has to be caused by a pathogen...doesnt it???
 
Cort, this is confusing. in the first sentence you say Dr. P doesn't think ME is "necessarily" tied to a pathogen, implying that it's possible. Then you say he thinks it's "clear that ME/CFS is not tied to... a bug."

Pls clarify which view he really holds. I would think the first, since the second is so extreme and seems unsupported by the science to me.
Remember this is based on notes I took after our talk :) - I think the first sentence makes sense by it self; with the second it suggests the CFS is not to a specific bug; that is, my guess is that since a number of pathogens have been shown to trigger it and since he can find herpesvirus or virus activation in some patients not others - he believes there is not one specific pathogen that is causing CFS (at least so far as science can tell at this point).

I think this is why he's really focused on 'sickness behavior' ; ie the cytokine or other cascades in the central nervous system that some people think cause the flu-like symptoms in CFS. Several pathogens or I suppose other problems could cause this.
 
Cort

In case you didn't know....Comments and questions are unsubmitttable to my story Drivng Miss Daisy. hmmmmm...conspiracy theory?:confused:
:D
Sorry Corinne! - we've had this problem with posts on the Front Page for over a month. I think if people enter through the Forum to get to the post - comments will take. Hopefully an upgrade will take care of this. In the meantime I will try to input a comment.
 
The high level of intelligence of this ME/cfs Illness Group never ceases to astound me! It is no wonder the medical world is intimidated when their Patients are so well informed on the deepest understanding of the illness! You All are amazing? I have a question from the discussions I have read if anyone can help me understand these more clearly? The other two questions will follow later! "As the early or innate immune response gets more attention, NK cells have risen in importance but for many years cytotoxic T-cells have received top billing. These more complex cells are the big guns of the immune response but both they and NK cells use the same methods to kill invaders. That killing process is impaired in NK cells in CFS patients and both Dr. Peterson and Dr. Klimas believe the same may be true in cytotoxic T-cells. If research indicates thats true, then you have a truly eyebrow-raising problem. 1. What is the correlation of low NK cell functioning to Cytokine-T cells? If low NK cells are prevalent in "depression" as someone previously stated, I would question the cell activity differentiation between situational depression, Dysthymia, all the way to Major Depression, Severe-Recurrent? 2. Have there been any studies that replicate NK cell functioning to Cytokine-T cell activity in people with PTSD? There seem to be far more ME/cfs patients with PTSD than most forms of depression, yet we know that one who suffers from PTSD may experience reactive depression during triggered stages of relapse.
 
This second question is in regard to the terminology by which we become "labeled"? The key ingredient in this disorder, Dr. Peterson believes, is something called sickness behavior, which he agreed was a terrible name for a serious, biologically based problem. Sickness behavior refers to the cytokine storm in the brain that causes the fatigue, muscle aches and pains, etc. that occur when we get a cold. Its possible that an initial insult somehow resets the immune system in the brain - turning it on permanently. (The Dubbo studies suggest that high cytokines levels early in the infection could somehow trigger this.) It could even be that in some people the brain has become so sensitized that it over-reacts to near normal cytokine levels in the blood. Other patients could have raging herpesvirus infections that are triggering this cytokine stormthere are multiple options but the key fact is that the central locus of ME is probably in the brain. Sickness behavior was a major focus of the State of the Knowledge Conference and a good deal of work is currently being done in other disorders to what effects may be a result of cytokine storms in the central nervous system... ." 1. Has this term, Sickness Behavior, been used in the scientific communication across ALL illness research, or is it now being spoken just for ME/cfs patients? It almost seems that the more the term is repeated, documented and believed to be a major focus it feeds into those who are determined to minimize this complex Physical illness into a Medical Industry Standard that our behavior is a choice to be sick? Is this Scientific use of this term at all similar to how the historical minimization of the illness name Chronic Fatigue Syndrome came about? 2. I know I personally do not experience Sickness Behaviors in the context that I am behaving as if I am sick? The phrase Cytokine Storm may more closely represent the internal devastation I experience when I am relapsing. So, I wonder if we can clearly label this cell activity with more understandable/useful identifiers such as those used for weather related storm identifiers. The Saffir-Simpson Hurricane Wind Scale describes storms in the present tense. So, I propose we consider a future use of Cytokine Storm (CS) categories such as: CS-CateGORY 1 - Minimal CS-CateGORY 2 - Moderate CS-CateGORY 3 - Extensive CS-CateGORY 4 - Extreme CS-CateGORY 5 Catastrophic Of course we all would have to accept that our bodies behaviors to the cell storm within us is a well defined "horrible (gory) activity (cate)" that is not within our individual control, choice or ability to naturally resolve.
 
The high level of intelligence of this ME/cfs Illness Group never ceases to astound me! It is no wonder the medical world is intimidated when their Patients are so well informed on the deepest understanding of the illness! You All are amazing? I have a question from the discussions I have read if anyone can help me understand these more clearly? The other two questions will follow later! "As the early or innate immune response gets more attention, NK cells have risen in importance but for many years cytotoxic T-cells have received top billing. These more complex cells are the big guns of the immune response but both they and NK cells use the same methods to kill invaders. That killing process is impaired in NK cells in CFS patients and both Dr. Peterson and Dr. Klimas believe the same may be true in cytotoxic T-cells. If research indicates thats true, then you have a truly eyebrow-raising problem. 1. What is the correlation of low NK cell functioning to Cytokine-T cells? If low NK cells are prevalent in "depression" as someone previously stated, I would question the cell activity differentiation between situational depression, Dysthymia, all the way to Major Depression, Severe-Recurrent? 2. Have there been any studies that replicate NK cell functioning to Cytokine-T cell activity in people with PTSD? There seem to be far more ME/cfs patients with PTSD than most forms of depression, yet we know that one who suffers from PTSD may experience reactive depression during triggered stages of relapse.
I don't know the answers to most of these questions. This interesting blog has some facts on NK cell abnormalities in CFS and depression and other disorders. Its interesting that endometriosis - which an upcoming CDC study suggests is common in CFS - is also associated with NK cell problems. The article also states that some studies link low NK cell functioning with depression while others do not.

It states that PTSD is linked with reduced NK cell functioning and that laughter increases NK cell activity. All of this kind of makes sense at least to me with my increased state of 'arousal' and the help that stress reduction protocols afford me. PTSD is, after all, a kind of state of really heightened arousal. I'm beginning to think of ME/CFS as the product of something that shook ones system so strongly that it never found its way back to normal.
 
T 1. Has this term, Sickness Behavior, been used in the scientific communication across ALL illness research, or is it now being spoken just for ME/cfs patients? It almost seems that the more the term is repeated, documented and believed to be a major focus it feeds into those who are determined to minimize this complex Physical illness into a Medical Industry Standard that our behavior is a choice to be sick? Is this Scientific use of this term at all similar to how the historical minimization of the illness name Chronic Fatigue Syndrome came about? 2. I know I personally do not experience Sickness Behaviors in the context that I am behaving as if I am sick?

The phrase Cytokine Storm may more closely represent the internal devastation I experience when I am relapsing. So, I wonder if we can clearly label this cell activity with more understandable/useful identifiers such as those used for weather related storm identifiers. The Saffir-Simpson Hurricane Wind Scale describes storms in the present tense. So, I propose we consider a future use of Cytokine Storm (CS) categories such as: CS-CateGORY 1 - Minimal CS-CateGORY 2 - Moderate CS-CateGORY 3 - Extensive CS-CateGORY 4 - Extreme CS-CateGORY 5 Catastrophic Of course we all would have to accept that our bodies behaviors to the cell storm within us is a well defined "horrible (gory) activity (cate)" that is not within our individual control, choice or ability to naturally resolve.
Sickness behavior is a commonly used term that refers to the symptoms that occur when we come down with an infection. It was coined when researchers realized that the pathogen itself was not causing the symptoms; the central nervous system was. The 'behavior' connection refers to the idea that the central nervous system is purposefully causing people who are infected with a bug grief in the form of flu-like symptoms in order to get them to slow down, conserve their energy and not infect others. So - the term itself has nothing in particular to do with CFS - except that people with CFS typically experience symptoms associated with infections.

Cytokine storm is something of a poetic term :). It refers to the idea that the neuroglial cells, I think they are, in the brain are probably pumping out cytokines and other immune factors when we are sick.
 
cort...may i ask....why does peterson think cidofovir works on his patients? does he still think its hhv6a?
 
Thank you Cort for this interview with Dr. Dan Peterson. Here at PANDORA we are excited about Simmaron and its great potential. Keep reporting about the good initiatives that are finally coming forward on ME/CFS and other NeuroEndocrineImmune diseases. The best is yet to come! Marly Silverman, Founder, PANDORA Member Steering Committee, Coalition4MECFS.org Vote on Jewish Community Heroes.org web site to give PANDORA a chance at a $25,000 charity grant.
 
cort...may i ask....why does peterson think cidofovir works on his patients? does he still think its hhv6a?
I don't know. I think it works pretty well on cytomegalovirus and it may be that he's focusing on that group - but that's a guess. He does think the new version will be active against a broad range of herpesviruses. I believe he'll start testing out in his patient population over the next couple of months and it'll take six months after that, I imagine, to get word on how well they are doing.

The drug is not available commercially yet.
 
Thank you Cort for this interview with Dr. Dan Peterson. Here at PANDORA we are excited about Simmaron and its great potential. Keep reporting about the good initiatives that are finally coming forward on ME/CFS and other NeuroEndocrineImmune diseases. The best is yet to come! Marly Silverman, Founder, PANDORA Member Steering Committee, Coalition4MECFS.org Vote on Jewish Community Heroes.org web site to give PANDORA a chance at a $25,000 charity grant.
Thanks Marly. Marly is what I think you call a 'change agent'; she started PANDORA and helped start MWCPA and Coalition4ME/CFS.... she could do an awful lot of good with that money. I would love to have $25,000 in Marly's hands to assist people with ME/CFS. She's in a good spot with this contest - lets vote her in! :victory:

Check out more about the contest in this article just posted on the PR Frontpage

http://forums.phoenixrising.me/content.php?495-Making-Marly-Count!-Vote-To-Win-25-000-for-ME-CFS