Hello All,

I have not said a lot since joining this site as I tend to speak when something needs to be said only. I have edited much of this to facilitate easier understanding but one just cannot avoid some jargon.

I chose to use only one example of corruption of the scientific method - trust me, there are many others.

IN NO WAY DO I CLAIM RESEARCHERS ARE ALL CROOKED. IT IS A POLITICAL THING. (Please excuse the shouting).

Regarding the use of ABSTRACTS
Just a few notes to hopefully help some of you navigate the mire of misdirected scientific research and how the public can be mislead into making a judgement call when they rely on accepting the recommendations of doctors if they also choose to use these due to time constraints – ABSTRACTS THAT IS.
I have seen it noted that some people have used hundreds of ABSRACTS to form their ideas. This is at the very least worrisome.
This document is written from the perspective of a trained scientist (me) so I am writing within my own experience and its purpose is to clarify.

The true purpose of an abstract is to present an accurate precis of the work undertaken that is a quick study to tweak the interest of readers – whetting their appetite if you will. Unfortunately, this process has become corrupted with carefully chosen wording to make it (the Abstract) say what the orchestrators of the study wanted…..a slight of word if you will and with time short – it is taken as a full register of the theme of the work.

It is rare for a study to be designed with realistic analysis in mind - they try to fit the analysis in later. This too is questionable.

The only way to resolve this is to read the WHOLE ARTICLE which requires an understanding of statistics (not simply P<0.1 statements). These are pretty much meaningless by themselves. It also requires knowledge of the scientific method let alone the mechanisms physiology and anatomy and in our case biochemistry being studied.

To use an example that does not require deep understanding, the way in which Cognitive Behavioural Therapy (CBT)has leapt to prominence as being considered to be supported by Level I evidence (the highest level) raises issues when a lot of posted research is read IN DETAIL. The truth is (CBT) is done in groups because it is cheap (well documented by the British Health System) and the results for pain studies are largely based on Lower Back Pain studies – it is very difficult to find legitimate work relating to CRPS / RSD. What does happen is the work is interpolated or extrapolated to include ALL pain.

Additionally, the statistics are highly questionable. It is NOT ACCEPTABLE practice to allow crossover from a control group to a study group and many of the studies of CBT do just this. Further, they also allow the size of the study groups to be small – another statistical faux pas. They also seem content in many studies just to run with a few %’s and call them valid statistics….oops!
When meta-analyses are done to try to validate much of this work it is discounted in quite large quantities. Thus, only a small amount of the work out there can be regarded as legitimate for CRPS / RSD.

Now, where does that leave US?
Those of us who read only the ABSTRACT are left in the lurch with misinformation and problemlatic dogma in many cases. The remainder of the article often needs to be purchased from reputable sources such as Elsevier. This is understandable as these articles are in depth medical studies from highly reputable institutions.
As a scientist and yes I do have severe CRPS, it worries me that some people address numerous topics with such authority based on ABSTRACTS when they are using, at best, aged, misdirected and fragmented opinion. This opinion is frequently presented in forums whereby the uninitiated and perhaps not so-well informed trust those words written by those promulgating knowledge that is at best a sketchy twisting of the scientific method.
CHOOSE CAREFULLY AND WISELY my friends.....please!
I worry for our future.

I wish you all the very best success in finding something and someone to help ease your pain.

Auberon

Auberon,

A very thought provoking post. Thank you for putting that perspective out there for us to digest.
Even though I do have 30 years of working in the medical field and thus slightly higher than average understanding of medical jargon, I find the confusion these abstracts can cause incredibly frustrating.
I plod through so much of it and find that much is quite outdated and often a very subjective opinion of a medico with a mission.
Many of us here are more than happy to do our own research but many would rather depend on what others post and this is when the confusion can take hold. So many conflicting opinions and heated discussion which could well be helped by reading the whole article on the topic at hand.
Regards
Tayla

Hi Auberon,

I am one of those who use abstracts in my research, and I do it for a couple of reasons: Articles are filled with statistical information that is of no ues to me, I passed my statistics classes in the early 1970s and as soon as I walked out of finals I forgot 90% of everything I learned; I can't afford to pay the $20.00 to $60.00 to even more that many articles cost, and articles are so filled with words and phrases I've never seen before and it would take hours to learn them.

Abstracts provide the basic information I need: The goal of the research; the methods or instrument, and the conclusions.

When I first began researching RSD I had no idea what I was doing, and I saved a lot of useless stuff. As I became more discerning, I learned to ignore abstracts that didn't discuss some sort of research (and that's about 90% of the literature on this disease: Just someone's opinion on what happens).

When I moved on to learning about the immune system, oxygen free radicals, polymorphonuclear leukocytes, phagocytes, etc, I found fewer opinions and more research. Over time I could see when several research articles reached the same conclusions and concluded that widespread agreement is a good predictor of reliability.

I have also seen many examples of research designed to lead to the conclusion the researcher wanted to reach, and became a better judge. I have even learned enough about RSD, IRI, nerves and circulation to identify fatal flaws in research design, and even to tell when a "researcher" is just plain lying.

As you probably noted in my post to Mike, I noted that the stuff he presented had nothing to do with the topic: whether there are psychological factors predisposing someone to RSD. I pointed out that if the material didn't discuss RSD AND psychology, it doesn't apply.

I would prefer to find lots of research abstracts about the etiology of RSD, but neither they, or full articles exist. I am faced with the choice of giving up because I can't find what I want, or pressing on to learn what I can.

My conclusion that RSD is an ischemia-reperfusion injury (IRI) is based upon the fact that I know that nerves and nervous systems don't do what RSD "experts" tell us they do; and that impaired microcirculation can cause the signs and symptoms the "experts" falsely claim that our nerves cause. And the signs the "experts" pretend don't exist.

When I came across IRI I was forced to learn about the immune system and oxygen free radicals, and when I finally understood that disorder I realized that it starts the same way RSD starts; progresses the same way RSD progresses, and; ends with plugged microvascular systems, which is the only explanation for our signs and symptoms.

I know I will have a more dfficult time persuading people that RSD is IRI than I would have if I wore a lab coat and had a rectal thermometer in my pocket, but I do what I can, and all I can do is keep posting what I've learned until people begin to understand that I do know what I'm talking about.

When that happens, they will understand that hyperbaric oxygen (HBO) has a mechanism of action that does affect RSD and can lead to a better life. When that happens, I will have accomplished something worthwhile. I don't think any of this could happen if I had not relied upon abstracts...Vic

As a rule, I try to get my hands on the full texts of as many articles as possible, often through the kind assistance of a friend of mine who can just access his university's data base. Then again, sometimes I just pull out my credit card and buy them.

And to refer for a moment to the thread Vicc cited, the only article for which I did not provide access to a full text copy was one directly (as in absolutely) related to the topic at hand, RSD and stress: "Stressful life events and psychological dysfunction in Complex Regional Pain Syndrome type I.," Geertzen JH, de Bruijn-Kofman AT, de Bruijn HP, van de Wiel HB, Dijkstra PU, Clin J. Pain, 1998 Jun; 14(2): 143-7. Nevertheless, I regretted having only the abstract available.

Mike

Mike,

I don't have friends with access to articles, but as I said, they are less useful to me than abstracts.

And I did not complain about your lack of articles; in fact, I believe you post too many: Articles so filled with medspeak that no one here can possibly understand them. If you can't understand the words, you can't understand the sentences, the paragraphs or the article.

In my mind, this is a variation of "If you can't dazzle them with brilliance, baffle them with ********"

What I said in my reply was that nothing you posted (including the Geertzen abstract), had anything to do with a psychological predisposition to RSD. I'd be interested in seeing a reply that discusses this...Vic

My conclusion that RSD is an ischemia-reperfusion injury (IRI) is based upon the fact that I know that nerves and nervous systems don't do what RSD "experts" tell us they do; and that impaired microcirculation can cause the signs and symptoms the "experts" falsely claim that our nerves cause. And the signs the "experts" pretend don't exist.


Vicc,
Can you please, please explain how you "know that nerves and nervous systems don't do what RSD "experts' tell us they do, and that impaired microcirculation can cause the signs and symptoms the "experts" falsely claim that our nerves cause. And the signs the "experts' pretend don't exist" ?

Are we to believe that these people who spend years and years researching this disease are NOT experts but you are?
Please explain so that we can choose to not believe every single article about RSD that tells us that RSD is in fact a neurological disease.
Why would everyone one of these 'experts" whose opinions you clearly disagree with get it wrong?
We are not just talking USA here , but everywhere in the civilised world where research of RSD/CRPS takes place. There are a multitude of extremely intelligent people amongst them, why would they want to intentionally deceive us.
Sorry, it makes no sense to me but am happy to change my mind if you can provide a reason for me to do so.
Tayla

Hello,
Debate WITHOUT sour comment is just what we need to get our creative juices flowing. Not preaching one view over another. Should we not close the mouth & open the mind politely. For goodness sake, aren’t we trying to understand what has happened to our lives and we ALL need to pull together.
1. Numbers were designed to lie – that is the aim of statistics whether you use Euclidian or other base 22 systems.
For Michael: I agree and even though the Clinical Journal of Pain Articles can be difficult to grab they help. The small price for the few select articles I have purchased have been worth their weight in gold as they are right on the money.
I find your posts of great value.
My life is so down the tubes with this thing that I would delight in any genuine progress.
I am hugely concerned with improving my quality of life(QOL) – and should I find a valid approach I would be more than willing to share….the trouble is it doesn’t yet exist.
We may be looking in the wrong areas – and perhaps should be looking towards stem cells (our own) to lift QOL and account for demyelination & the unexplained things nerves can cause / do or whatever the hell causes this.
2. FOR ALL READERS:
My present problem is that body systems cannot be considered in isolation.
We are a WHOLE BEING – a system that interacts (I’m sorry this is put so simply).
For Tayla thanks for the comments….I have had significant issues with opinionated and ill-informed medical consultants. I think we ALL need to remember that a doctor is a paid consultant – not a GOD and this is the reason we need to be so well informed.
Vicc: I have ONE question and would like to address just ONE question at a time from what you have raised. First, an abstract that doesn’t discuss some method / process is an Extension Article written for people without the technical base to understand the article.
Abstracts are designed to get more research dollars – it is a process.
If I read your posts correctly, as I understand the terms, phrases etc I appear to be either full of ******** with some kindred spirits or I have a superfluous thermometer uncomfortably placed.
So to the question Vicc:
I read that Abstracts provide the basic information you need and should you see that any research of any kind has been done with your key words that it is OK and assumed correct. No further work required, even if that research has been corrupted through numbers and crossover from control groups has been allowed.
IS THIS CORRECT?
An abstract cannot contain sufficient information to judge this and there are enough free articles to help with whole article access. You do go to a lot of trouble to defend the shortcut method of just relying on abstracts when you have a barrel to push at people without the support of logic and science.
The numbers are easily made to lie so they can say what they want to get more $.
Just a note: Peer review in medicine doesn’t work. So that is not an out.

Tayla,

I challenge you to find any evidence of any disorder caused by nerve damage that can simulatneously affect skin; bone; muscle; nerves and the vascular system, one that can affect afferent and efferent nerves of the peripheral and sympathetic nervous systems, AND can simply wander where it will throughout the body.

If you can do that, drop a note to the National Institute for Neurological Disorders and Stroke, because in 2006, it repoted "The cause of CRPS is not known" [1].

Are we to believe that these people who spend years and years researching this disease are NOT experts but you are? Yup. These people who spent years "researching" RSD have not yet published a single article linking this disease to nerve damage. They claim it, but they can't prove it.

There are a multitude of extremely intelligent people amongst them, why would they want to intentionally deceive us. I have several ideas about why they would want to deceive us, but nothing to prove any of them. Why not ask they why they refuse to even mention the word cyanosis? Every time they publish a list of signs and symptoms of this disease and omit cyanosis, they are deceiving us.

These are just brief yet compelling arguments, others can be found in posts I've made in the past, while still others -- specifically why traumatic nerve damage cannot cause the pain associated with RSD -- will appear in the future.

If you want to argue that traumatic nerve damage causes all of the signs and symptoms of RSD, why not find some research that confirms this? Vic

Afterthought: Since it appears to be widely accepted that CRPS-I (the overwhelming majority of RSD cases) is NOT caused by nerve damage, why do you insist that it is?

Vicc, greetings,
CYANOSIS is a medical descriptive term for the bluish appearance of poorly oxygenated (generally) peripheral tissues.
It gives no indication of cause. Determining cause is the clinicians’ job.
It just is bluish tissue.
It is not a disease state. I think too much credence is being given to an innocuous sign / symptom of an underlying diseased state.
Cyanosis has a cause – a multitude of causes in fact – it can be a cold limb, poor venal flow, poor capillary flow or poor performance of the heart due to arterial plaque just to name a few. It can be due to substance P and its effect on other tissues. I also believe some cyanosis can be presented by ADP affecting mitochondrial respiratory process...but this is a stretch. It can also be due to the NADH going awry in the Krebs cycle. ALL CAUSES.

The question is why have these things caused the cyanosis?

Every mammal can express it and the causes are always the same. It is one of the signs and symptoms of small stomach worm infestation in all mammals and occurs in the mucosal membranes. In fact when managing flock animals it is the first sign one looks for to indicate internal parasites. They are being bled to death by the worms. SIGN derives CAUSE derives TREATMENT derives (if caught soon enough) well animal with pink membranes.

So I am confused as to how this has become the spectre causing RSD / CRPS.
It is derived from the Greek language and in no way implies the presence of cyanide (HCN).
Clarification would be greatly appreciated Vicc.

Appreciate the time. Auberon

Auberon,

Had you not written: I have seen it noted that some people have used hundreds of ABSRACTS to form their ideas. This is at the very least worrisome. I would not have commented here at all.

Since I am (to my knowledge) the only person here to have written about extensive use of abstracts, and I only wrote those words days ago, I have to assume that was directed toward me and that others would read those words -- written by a scientist -- and assume I must be irrelevant. A reply was necessary.

Here is how I used abstracts to conclude that explanations for traumatic nerve damage as the cause of RSD are nonsense, and why abstracts convinced me that ischemia-reperfusion injury explains every sign and symptom of this disease.

I read, or skimmed, hundreds of abstracts about RSD that I found at PubMed and MedScape, and didn't find a single one that referred to research showing that nerve damage causes RSD. Had I found such an abstract, I might have paid money to read the full article.

Thousands of people who suffer from this disease die every year, yet I have not seen a single abstract describing necropsies that found nerve damage. The one abstract that did involve necropsies found minor nerve damage in a few of the samples, but NONE that could explain the signs and symptoms of this disease [1].

In my review of abstracts on the subjects of the immune response to trauma, oxygen free radicals (OFRs) and ischemia-reperfusion injury (IRI), I found many describing in VIVO and in VITRO research, and all of them substantially agreed with one another.

The cause and course of IRI is clearly understood and almost universally agreed upon, and I was able, with my lay-persons education, augmented by what I had learned by more than two years of my studies, to extrapolate how every sign and symptom of RSD (including symptom migration) is explained by IRI.

2. FOR ALL READERS:
My present problem is that body systems cannot be considered in isolation.

Auberon, my problem is that every neurological explanation of RSD is just that: Limited to one body system; the nervous system. And none of the conclusions I found were supported by objective research. The bottom line with all of them is: "Because I'm an expert and I say so".

Vicc: I have ONE question and would like to address just ONE question at a time from what you have raised. First, an abstract that doesn’t discuss some method / process is an Extension Article written for people without the technical base to understand the article.

I found many abstracts discussing RSD that didn't require much in the way of technical understanding, but unfortunately, none of them made a bit of sense.

In order to understand IRI, one must understand the immune response to trauma and specifically the role of polymorphonuclear leukocytes and OFRs in that response. It took me nearly two years to feel confident that I had learned enough about them, so some technical knowledge is necessary, but such knowledge is not beyond the lay-persons ability to understand.

If I read your posts correctly, as I understand the terms, phrases etc I appear to be either full of ******** with some kindred spirits or I have a superfluous thermometer uncomfortably placed.

I don't know whether you carry a rectal thermometer, but your claim to be a scientist does conjure the image of the lab coat (and ya gotta admit that was an eye-catching line: I stole it from Lewis Black). If you place yourself in league with "experts" who don't use science to explain RSD, I guess you are full of ******** too.

I am hugely concerned with improving my quality of life(QOL) – and should I find a valid approach I would be more than willing to share….the trouble is it doesn’t yet exist. Why not investigat IRI? Your education and training should allow you to reach some conclusions in far less time than I took; and if you disagree with me you will have scientific reasoning to support your view.

(Others would find such a discussion/debate incredibly uninteresting, but I would be overjoye to find someone who could discuss that topic).

For Michael: I agree and even though the Clinical Journal of Pain Articles can be difficult to grab they help. The small price for the few select articles I have purchased have been worth their weight in gold as they are right on the money.

First, Mike doesn't just post articles from that journal; almost any article that mentions Il-6 is fair game for him, and I daresay you would have a difficult time understanding all the medspeak found in them. The rest of us can't understand a bit of it, so these articles are virtually useless.

Second, at the risk of calling in a new plague of medspeak, why not share one of these priceless articles with us? Just try to limit yourself to research that addresses RSD specifically, and not chronic pain, which is vastly different...Vic

(added later): The program somehow made the font on my tag line much smaller than intended, and the edit option does not allow one to change font size. Sorry about that.


A [ ] with a number inside means I will email you a copy of the article cited. Just click the “rsd_hbot” link at the bottom of the page and type in the title of the post and the number(s) you want to receive.