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Part 3: How I look at new discoveries pertaining to FM research
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Mark Pellegrino, MD posted:
I enjoyed reading all your responses and input from last week's discussion where I introduced the question: "which came first, the chicken or the egg?" You are thinking and connecting so we have hope after all!

The key part the the metaphoric "chicken or egg" question is "Which came first?" Did the XMRV infect someone and then he/she developed FM/CFS, or did the person have FM first, and the altered immune system which led to an opportunity for XMRV to infect? Or other situations you've posed: FM first then depression, or vice versa? Thyroid problems first then FM, or vice versa? Inheritied vulnerability first then FM, or random FM, or does FM change our genes and we pass them to our offspring? All these questions but so few definitive answers yet.

Remember you are asking the question as a way of reviewing and analyzing any research or new finding, not because you know the answer (or I know the answer!) We don't know any more about XMRV other than it's possible relationship to CFS, so furthur research needs to be done. We do know that FM is more common in families so there's a hereditary connection. FM can lead to depression, not the other way around. Thyroid problems can cause a FM-like condition and FM can lead to FM so this one works both ways (see my answer to a thryroid question http://forums.webmd.com/3/fibromyalgia-exchange/forum/14905 ) We have to ask these questions to make sure we understand what is scientifically sound or suspect. In the past FM was blamed on depression; we need to be careful that we don't jump to wrong conclusions again.

To summarize so far, the first question is
1. Is this a smoking gun? The second question is
2. Which came first, the chicken or the egg?

The third (and last) question to ask when analyzing research:

3. Is the paint wet or dry? This is a clever metaphoric question :) that aptly applies to the XMRV example. Remember this is a metaphor so don't be thinking lead paint!!

I look forward to your replies. Happy Mother's day to you fibro moms. By the way, my mom has FM too so I can blame her for mine!!
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fibroinsd responded:
Ok...looks like I need to do some thinking here...wet or dry?

Wet would come first and then it would dry out??? hmmmm

cece
 
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icyhotmama responded:
But can't paint still look wet and be totally dry Cece?
We do have alot to think about!

Lydia
 
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MagPrincess replied to icyhotmama's response:
So where as we are thinking that the XMRV is Wet paint as in very new it is actually dry paint that looks wet?
 
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jazzeesmom responded:
And I am one to touch wet paint even if there is a sign stating that it is wet....LOL I will really have to think on this one..
 
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alispazz responded:
Doc

I love the question, and normally I would jump right in... Way to much pain right now to even try.. hopefully by next Sunday.. I've read the others reply so far and I think you might have all of us going... but we will each figure it out, after all some of us are pretty smart ladies, and gents.

Ladies consider this dry paint can be made to look wet if we wash it with something.. he did say a clever metaphor. Me thinks the Doc is trying us to go back and read all that we have said so far.

Ali
 
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debw216 responded:
Hi Doc! Well, guess I'll jump into this one. Hell, I don't even think the paint has left the factory yet! Let alone, is it wet or dry.

I think we can all agree on what we "do" know.... But I think we need "ALOT" more research to understand just where FM comes from. I still think it is auto-immune related. Just ask how many FM'ers have a separate immune related disease...and I think the answer is quite high. The fact that it also tends to run in families also lends support to this....in my mind, anyway.

I think, that the paint is still wet. And will only become dry, once the research starts to show promise on the cause of FM and hopefully one day, a cure as well.

I find it interesting that we know how to 'treat" certain diseases.... But yet, we can't seem to find a cure for them. And it would seem, that alone, would in a way "jump start" the research on them. Just a thought.....

Yep, blame the moms....we catch all the flack. (grin)

DebW
 
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Anjl26 replied to debw216's response:
Dr P, I am an RN working in the area of research, so I don't think it's fair for me to answer and spoil the fun. LOL

I am quite excited to see this discussion going on though. Folks need to understand what it means when one single study supposively "proves or disproves" something.
 
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alispazz replied to alispazz's response:
Its now Monday and I have gone over this question over and over in my mind...

Depending on how you have looked at all the evidence, my conclusion is it can be both at the same time.

Think about this: Before coming down with all this mess I now have to live with I was active, healthy and pain free. Then Bammmm out of nowhere came this jerk on a cell phone slam into my car and I will never be the same again... Yet millions of people have accidents and do not sustain the life long sentence....so how did that happen? This is dry.

Predisposition comes to mind.. there was something in my DNA that was sitting there calmly waiting to see if something was going to set off a chemical reaction if you will to start the wet paint flowing.

I'm not sure I completely have a full grasp of XMRV, or any retrovirus....However I think I understand that while some people who engage in homosexual activities get Aids others do not so there has to be a trigger/weakness/predisposition in the persons DNA that allows the change from healthy. Something in Our DNA that cause us to behave in certain ways, also exposes that trigger/weakness/predisposition.

So many of us have said that we were active, healthy, type A personalities, most held high stress jobs or lived in high stress environments, we were pushers, go getters, never say die people.

Nana B, Sharon, and other have worked as nurses, that can not be an easy profession. Others worked in high risk environments, around chemicals...Jim and JimII worked in high risk area for stress though at the total opposite end of the spectrum.

Jim as a PI had to always be very aware of things around him, always just on the edge of an adrenalin rush, and sometimes crossing into it

JimII as a pastor had to always be on call to his flock and he would have gotten sudden adrenalin rushes when he would get calls saying that one of his flock was in need of him.

Yet both men from what I am reading have a common thread.. the stress of Viet Nam. Most of us can only imagine what that was like yet they lived it and probably still live it, adding that to the stress of every day life and their chosen professions, we might be able to conclude that their Fm is caused by stress, which allowed the weakness/predisposition to .

to be cont..
Ali
 
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georgia888 responded:
Wet or dry, I don't know & at the risk of sounding ignorant, I'm not sure I understand this metaphor. What I do know is that my FM was caused by a repetitious physical activity which was exacerbated by physical therapy. I recall every minute of every day that lead to this very physiological condition I've been cursed with. It struck my axial skeletal & I endure perpetual pain & stiffness from my neck to my toes. Added to this extremely unpleasant & frightening state is a dose of myofascial pain syndrome. I have osteoarthritis that was unknown to me until I developed FM & MPS.

Mine is a case of a most definite predisposition. I've always had weakness of my shoulders & arms & these unconditioned muscles are the very ones that endured the initial repetitive injury. It started in the neck & traveled down my spine.

I don't suffer from touch of any kind. I've read where some with FM can't tolerate a hug. Mine is strictly musculoskeletal.

That's my story, be it wet or dry.

Thank you,
georgia
 
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Foxgrove responded:
Very interesting Dr P. I have to say up front I have loved reading and applying your answers to my own personal fibro battle. It has been so good to have another understanding voice who clearly understands all that is at stake here. Thank you.

As to your question.. I would have to say most certainly the paint is wet... If you are indeed referring to the concept of wet logic and dry logic as I believe you are.. wet logic is in the brain, intuitive, comparitive, analytical.. dry logic is the data, that which you can see and touch.. results of lab testing, results of studies and research, results of real world tests..

What we have at this point is a great number of possible answers. What we are generally using to tie them together is called an intuitive leap.. It's not that intuitive leaps are always wrong.. indeed they are often very much on the right track.. However, unproven ideas are still completely open to change while data is more open to interpretation than change.

As we do more and more research, the paint begins to dry and we can interpret to get our answers rather than face outright denial or unsubstantiated and unproven therapies that could be harmful to our forward progress.

Was that the idea you were looking for?
 
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alispazz responded:
Okay I'm back...where was I ????

Oh I had to stop and go check out something that struck me like a lightning bolt...

I thought I remembered that the virus that causes HIV is thought to be the same virus that struck Europe during the dark ages, around 12-1300... This virus is believed to of been carried into Europe by rats, millions of people died and those who did not were exposed and the later in history conclusion had a DNA, that protected them, some became very ill but they survived, in turn it was concluded that the survivors these people probably would not become infected with HIV.

When HIV struck in Africa they were extremely vulnerable to this, they had no natural immunity to it.
Again it is thought that the virus was spread at first by Monkeys. Though in a slightly mutated form of the same virus that caused the great plague.

SO here we are all these years later, descendants of the Europeans that survived, and we have a study that strongly suggest that we are now being affected by the same virus.

So in thinking of DR Mark's questions from this perspective, of the smoking gun, the chicken and the egg, and finally the paint wet or Dry....the answers are a little clearer perhaps.

Smoking gun...possibly, since the virus has remained hidden somewhere in our DNA, though I am assuming that it probably is diluted somewhat, depending on our ancestry.

That would take the chicken and the egg to a new level.. while the chicken came first, we need to discover what fertilized the chicken to create the egg (WE ARE THE EGG).
What happened in our RNA to awaken the DNA

Each of us would have to look back and say okay, I have had this, this and this.

A lot of infections, a lot of stress, an accident, then we would need to compile all the data and and see where the preponderance of evidence leads,

The finding in the report on the XMRV, could be accurate to the point of CFS, but is it accurate to say it is also the same virus that causes FM or MS or any other illness that we now experience.

The paint is wet, but to get it to be dry there has to be more to get it dry, Paint has to have low humidity, a temperature range, and adequate time for the thickness of the paint.. also air flow...

My original statement stands that stress could be a factor, but there are any number of factors that could of caused this..

My conclusion it that we need a better understanding of all the eggs.


Ali
 
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Dollbug responded:
Hello Dr. P.....3rd question is a mind boggler for sure...

I have thought about it....and the only thing I can think of is sometimes.....the paint might look wet but it is the way it looks and it is really dry. So I guess in comparing this to the wrath of the dragon....the first impression that researchers have might look like it is the missing piece of the puzzle....but with a closer look and more in depth study.....what looked like it was going to be the answer.....turns out not to be...

OK.....perhaps I have missed the boat completely here....

Now....your last statement is just like a man.....blaming something on his mom.....I have 2 boys and 1 girl....and 2 grandsons and 1 granddaughter.....I sure hope that none of them inherit the dragon from me.....not good for the mind or the body....and I sure as heck do not want to get blamed for them having it....

I have certainly enjoyed this way of having questions for us to think and compare our thoughts on what it might mean to us...

Thanks again for your time here.....


MiMi
 
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Mark Pellegrino, MD responded:
You all put some great thought into this; I enjoyed reading your interpretations! Let me say that you all are right because it is a subjective interpretation so there are no "wrong" answers. :) :)

But if you want to know whose response matched my interpretation the closest, then that person is : magprincess!

Wet paint means that the problem is active and continuing to cause symptoms. In the case of XMRV, high titers of the virus in the blood could indicate active ongoing chronic infection. It's important to know if the process is active because treatments directed toward the virus (antiviral meds, immune boosters) may help.

Dry paint means there is no longer an active process. In the XMRV example, the virus may have causes an infection in the beginning and triggered the cascade of events leading to CFS, but by the time the CFS developed, the viral infection is long gone. Viral titers (paint) may still be measurable in the blood, but the virus is no longer active or contributing to the ongoing pathology. That is, the paint is dry. Treatments for "wet paint" would not likely work if the paint is dry.

This metaphoric question can be applied to any causation research where we are wondering if certain treatments will work depending on whether the "cause" is active or not.

I hope you found this helpful. Was it a clever metaphor as I claimed? Well I still think so but I suppose that's open to discussion!

P.S. Did I mention that I think you are a very compassionate and understanding group?!

Dr. P
 
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Dollbug replied to Mark Pellegrino, MD's response:
Hello Dr. P.....MiMi in NC....some of us have been here a long time.....I refer to some of us as being "oldie goldies"....I personally think we are a "unique" group of people here....and we have learned a lot together....

It has been my mission to stress how important Vitamin D is....only because I found out how painful it was for me...I find it still interesting that doctors do not know to check for this....as in a lot of cases....the D level is so very low for a lot of us....

I know that I have read up on this a lot and it has been linked to other illnesses as well....but there is still not enough said and done about it. There are times when I would just like to "shout it out to the world" because I think it is so very important for everyone...

I often wonder why I was "blessed with the wrath of the dragon" as I do not think I had time for all of this.....boy, did my attitude change and it changed fast....there are days when I feel ok....and then BOOM.....something causes me to go into overdrive....and then I completely run out of gas.....well...at this point....I can do absolutely nothing....until I have rested up and recharged again....and I HATE being this way...

I have the pain under control.....now if I could only find something to help the chronic fatigue.....there are days when the fatigue is actually worse than any pain that I have had...

Thanks again for your input here...we have been blessed....



MiMi


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