Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Where is the media? Where are the doctor's?

This morning I red in spanish daily "El Pais" (not for free in Internet)one interesting interview with Barry J. Marshall, australian, one of two doctors wich found Helicobacter pylori.

Journalist asked: "What did you feel when scientists didn't support your discovery in these days?" Answer: "10 years passed before they believed us". They isolated that bacterium in 1982, but untill 1994 the health authorities of USA didn't support them. "I was asking for money to farma-industry. Laboratories answered no, and they sent us some papers with documents and ulcer drugs advertisments".

In 1984 this doctor decided to swallow 20ml of Helicobacter Pylori: infected himself for experience!

How much money earned laboratories selling "Famotidine", "Ranitidine", etc? How many earned surgeons? And psychiatrists? 20 years later, this doctor will use money of Nobel award paying mortgage, bringing up to date the computer and repairing his car.

Pello.

Hi there, I went to PubMed and searched this. I didn't have time to look at everything that came up. However, just to dispell the myth that pharma companies control the research on this, I wanted to link you to this abstract K. Pneumoniae in familial AS, done by researchers at Toronto Western Research Institute and the University Health Network. These are teaching hospitals, just so you know, not pharma funded research facilities.

One of the researchers involved in the study, Dr. Inman, has been researching AS in families for several years. You will note that this study says that the k. pneumoniae link doesn't necessarily work in familial/genetic AS. Luckily, this was the first study to come up in my search, as I've not as much time for this right now as I would normally have.

I'm generally right in there on the pharma company agenda slate. I do believe that we are not being given the whole truth on any number of health related issues because pharma companies stand to lose money if unbiased studies are published. However, as this study shows, just because the study disagrees with Dr. Enbringer, doesn't mean it's been funded by pharma companies with an agenda. To assume that is the same as assuming that the only way the k. pneumoniae connection to AS can be proven is if Dr. Enbringer does the study himself.

And just for the record, I'm not taking sides either way on this in this post. I'm simply trying to make a specific point. Just as not all doctors are jerks who don't care, not all researchers are pawns of the pharma companies. Unfortunately, it's often left up to people like us, the laity, if you will, to do our own searching and researching to find the information that we need to make informed decisions on our treatment.That being the case, we must keep our minds open to all possibilities (until they are disproven), lest we miss out on information that might be helpful to us because of prejudicial judgements based in assumptions.

Sorry to sound preachy here.

Hugs,

QUOTE:

"Sorry to sound preachy here."

END QUOTE


Are you kidding me? Preach on, sister! Testify to the congregation, although I can tell you right now we won't be getting down on our knees in this particular church--either too hard or impossible for most of our members!

To turn serious, great post Kat. Information can come from many places, which is important to remember.

Brad

Hi, Kat:

It is VERY EASY to dispute the validity of these findings, since the study had at least one basic design flaw: We are not looking for differences in IgA levels, but it is HOW WE REACT to ANY (specific) IgA level that causes AS in the first place.

Experiment after experiment is conducted using improper DOE guidelines, and cited in attempts to discredit Ebringer's results. You are very right that not just BIG PHARMA has an interest in the status quo, but funding at the university level is a very tricky thing, also. I have seen papers that appear to contradict the 'germ theory,' co-authored by people doing some of the work both with and for Ebringer. The reason? Grant money (first I suspected this, but over a year later I confirmed it by asking some of the people directly involved).

Don't believe everything you read--even the committee at the Karolinska Instituet gets it totally wrong sometimes.

Besides, Ebringer's results are nearly a moot issue when compared with myriad other sources proving dietary connections with AS and other arthritides. More than a decade before Ebringer began using his London AS Diet in his clinic, Giraud Campbell had already published his work--with X-ray evidence that diet can reverse bone damage and eliminate AS symptoms. There are many others over the past 100 years.

I appreciate your bringing this paper to our attention; I stopped looking for them quite some time ago, refusing to toss the Philosophers' Stone back into the pond once again!

Best to You,
John

Wow! What a great group this is; so much passion, compassion, wisdom and advice. And nobody commented on my typo. Thank you for kicking some major AS!!!

These are teaching hospitals, just so you know, not pharma funded research facilities.

Here in the UK university research is funded partly by grants from government bodies (and other public sources) and partly from commercial organisations, with government contribution becoming progressively smaller making the labs increasingly dependent on commercial money. And of course if a pharmacuetical company wants to do a trial with patients it will have to work with a medical school or other hospital in any case. This has been causing such concern as to the direction academic research is taking, as well as to what gets published and what doesn't, that the medical journals like the BMJ and Lancet have tightened up their rules regarding the disclosure of authors' commercial links.

I doubt if matters are different in Canada; the idea that university research institutes are independent organisations free from commercial pressures is myth.

Testify to the congregation . . .

Would this be the feast of the asse, as celebrated by the medieval church?

hey, the ADM here is pretty tolerant...
they rarely call 'Comma Faults' so you're safe...(it's only five yards and loss of down if they see it.)

be forewarned, however, abuse of adverbs is a biggie.
aB

the group has gone through a number of rounds on these questions. I will point to some of my previous posts that contain links to medline abstracts or full text articles from the medical literature which contain information bearing on the controversial nature of the klebsiella molecular mimicry theory

I hope that posters that respond to this post will refrain from personally attacking other posters or attacking authors of these scientific studies. It is my hope we can agree to disagree respectfully.

medline is here:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed

recent previous post is here
https://www.kickas.org/ubbthreads/showthreaded.php?Cat=0&Number=180018&page=&vc=1
[note that the links within this post to additional previous posts under heading number three are broken, this is the result of the move of the board to the new host; the rest of the links to medline abstracts or to full text articles should work fine]

older previous post is here
https://www.kickas.org/ubbthreads/showthreaded.php?Cat=0&Number=53351&page=&vc=1

the 1999 Ringrose review article covers aspects this controversy in some depths, and the full text of this review article is now available on line
http://ard.bmjjournals.com/cgi/content/full/58/10/598
Ringrose JH.
HLA-B27 associated spondyloarthropathy, an autoimmune disease based on crossreactivity between bacteria and HLA-B27?
Ann Rheum Dis. 1999 Oct;58(10):598-610. Review.
PMID: 10491358

Specifically on the issue of IGA levels against klebsiella in AS subjects vs controls:
http://www.ncbi.nlm.nih.gov/entrez/query...st_uids=8835503
Sprenkels SH, Van Kregten E, Feltkamp TE.
IgA antibodies against Klebsiella and other Gram-negative bacteria in
ankylosing spondylitis and acute anterior uveitis.
Clin Rheumatol. 1996 Jan;15 Suppl 1:48-51.
PMID: 8835503
"...Examination for anti-Klebsiella antibodies was performed using three different strains, isolated from patients with ankylosing spondylitis. The sera were tested on antibodies against Klebsiella K43 (BTS1) as well. The number of IgA positive sera against Yersinia, Salmonella, Shigella, Campylobacter and Klebsiella K43 (BTS1) did not differ between HLA-B27 positive patients and controls, nor among the various groups. Differences were neither observed when the Klebsiella strains from AS patients had been used as antigen. These results do not confirm a relationship between HLA-B27 associated AS or AAU and infection with Klebsiella or other Gram-negative bacteria."

Here are recent articles discussing YET A DIFFERENT form of molecular mimicry: between a viral-derived peptide and a self-peptide, and its relation to the development of AS/spondyloarthropathy:

these articles discuss or present the new observation that a peptide (RRRWRRLTV) derived from the Epstein Barr virus (EBV) - the virus associated with mononucleosis - can be bound by HLA B27 subtypes in more that one conformation, and that this may allow differential immune recognition and activation of the immune response in a HLA-B27 subtype-specific manner. It is noted that this Epstein Barr-derived peptide displays substantial homology with the self peptide (RRRWRRWHL)derived from the vasoactive intestinal peptide receptor type 1-this self peptide is also observed to bind to HLAB27 subtypes in more than one conformation.

reviews/commentaries ON THE EBV peptide or its related self pVIPR peptide:

http://www.rheuma21st.com/archives/report_050225_hlab27.html

http://immuneweb.xxmc.edu.cn/wenzhai/pdf/007205.pdf

http://www.jem.org/cgi/content/full/199/2/151

original research reports on the EBV/pVIPR peptide:

http://www.jem.org/cgi/content/full/199/2/271

http://www.jbc.org/cgi/reprint/M410807200v1

http://www.jci.org/cgi/content/full/106/1/47

Evelyn, thank you for, once again, posting this info. I have a feeling that this won't be the last time.

Zdog, the issue of dietary involvement in AS tends to be rather hotly contested here. Not so much whether or not there is dietary involvement, but, rather, whether or not dietary involvement occurs with all of us. And, yes, we are very passionate when it comes to our individual beliefs on this issue.

Personally, I believe that while diet may be a factor in some (perhaps many?) of us, it is certainly not the case for all of us. AS is a highly individual disease, affecting each person in a very different way. We all respond differently to the various treatments, diet no less than any other. This is my belief, based on personal experience, talking to people here and research. You might come to a different conclusion.

I encourage you to do your own research. Talk to people. Try the NSD or the LSD for yourself. Then form a conclusion based on your own findings about which treatments will be most beneficial to you.

Hugs,