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Dr Trevor Marshall
Research Team
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Posted: Sun Jun 12th, 2005 13:31 |
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OK, here is the first news from the WASOG conference in Denver. WASOG is the umbrella group formed by the handful of sarcoidosis specialists who control everything which is published about the disease, and the direction of all ongoing research.
Dr Bob Baughman (U.Cincinatti) said he is going to start a trial of the Marshall Protocol in August. Now his part of the 'trial' is to test minocycline in the patients. A different research group (reportedly headed by Gary Hunninghake) is going to test the action of Benicar on Sarcoidosis patients. He explained that this is the way they think that medicine works - you test the effects of each component of a therapy in order to understand what is happening.
I have spoken at length with Alan Cantwell and Lida Mattman, and have seen how the forces of Status Quo suppressed their work, and will not stand idly by while they do the same with the MP.
I was talking to Lida at "30th Lyme" and complaining about the hurdles the sarc pulmos had thrown into our path. She said "But they haven't closed your lab down," reminding me that this is exactly what they did with her work. Her university-based lab was closed, and everything in it was destroyed. Allegedly because she was helping Doctors diagnose Lyme by imagining spirochetes in samples that really weren't there (according to TPTB).
IMO, having been unable to stop the message of the MP from reaching patients, what the Sarc pulmos intend to do is to run some bogus studies, 'proving' that the MP is worthless, publish them, and then scare physicians off from ever prescribing the MP again. This approach has worked before, why shouldn't it work this time? 
(Such is the mentality of these folks, whom the NIH has entrusted with the public health...)
So what can we do to try and bring back some SCIENCE into this disease?
Well, wouldn't it be a good idea if the NIH ensured that I (or one of my colleagues) was included in the planning of any trial of antibiotics in Sarcoidosis? Or of Benicar in Sarcoidosis? How can the NIH continue to promote a group (such as WASOG) who practice such exclusionary science (hey - that's an oxymoron  )
..Trevor..
ps: Here is the link to a summary of Lida Mattman's 1996 study
http://tinyurl.com/c78x9
And here is a slipshod study, financed by the NIH, so as to allow them to say that Lida was incorrect
http://www.chestjournal.org/cgi/content/full/123/2/413
And here is our response, Alan's response, and the Author's retraction of their alleged aim. It is important to note that CHEST never carried this "Authors' Reply" in their print journal - it is lost in cyberspace - 'hidden' away from your physician:-
http://www.chestjournal.org/cgi/eletters/123/2/413
Last edited on Sun Jun 12th, 2005 13:45 by Dr Trevor Marshall
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Paulafay
Member in Phase 3
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Posted: Sun Jun 12th, 2005 13:58 |
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Hello all,
Why can't we do a double blind study with the MP if this is what the medical community keeps telling us that this is what we need as proof positive that it works? It would just be nice to be able to give them a very concise reason when they question this - I am sure to point out that there have been no such studies for the prednisone, plaquenil and methotrexate but yet they prescribe these drugs..... but for some reason they all seem so "consumed" with the need for a double-blind study on the MP medicines?!?!?!? -
So I guess maybe a couple questions I have for this open forum would be:
1. Why is the medical community so against investigating the validity of the theory that Sarcoidosis is caused by bacteria? - (especially since they seem to be in such a stupor over what the "etiology" of this disease is)..
2. Why is the medical community so against prescribing drugs that work and so vigilant with their prescribing of the standard prednisone, plaquenil and methotrexate - (knowing that they only have the ability to decrease inflammation for a time and in the end will only cause more health issues for the patient) when neither treatment plan (standard/MP) have undergone the double blind study - yet the MP drugs HAVE been proven to be less of a health risk?
Thanks
Paula
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Sarcoidosis/lung biop thyroidectomy CA 125D74Feb05 25D30Mar05 25D12Oct06 25D9Feb07 Ph1Oct05 Ph2Feb07 Ph3Nov07 levothyrox Valium Tylenol PM Aleve Bolle100 limited outings covered
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Dr Trevor Marshall
Research Team
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Posted: Sun Jun 12th, 2005 14:11 |
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Paula asked two questions
1. Why is the medical community so against investigating the validity of the theory that Sarcoidosis is caused by bacteria?
The medical community is not against this - a handful of WASOG pulmonologists, whose income depends on a continuous stream of continuously ill patients, are the ones who have been resisting this change
2. Why is the medical community so against prescribing drugs that work and so vigilant with their prescribing of the standard prednisone, plaquenil and methotrexate
Dr Om Sharma, the titular head of the WASOG pulmonologists, has just completed a presentation in Denver where he explained that if the patients will only take their medicine, that their disease will not cause them any problem. He showed graphs (allegedly) demonstrating that when patients took their prednisone they didn't get any worse, and when they didn't take it they get hideously swollen fingers and go blind (and showed a slide of a horribly disfigured patient to drive his point home)(they didn't allow recording of this conference, else I would love to have put that presentation online so that you all could have seen it).
In summary, the sarcoidosis pulmonologists do not sem to be dealing in the same reality that their patients have to face. Yet these are the folks whom have been trusted by the NIH with taxpayer money to find a cure for this disease.
The reason it is pointless doing any more studies is that we already have the data which is needed to prove efficacy, and more studies will not change the ability of your physicians to feel comfortable prescribing you antibiotics. What Doc will listen to is advertising from the Drug company salesmen (who call on him every week) and info from the NIH. It is the latter that I feel we can change, by insisting that they only advise Docs based on SCIENCE, not on "anecdotal misinformation which has gained credence by repetition."
..Trevor..
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paulalbert
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Posted: Sun Jun 12th, 2005 14:41 |
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My questions would be these...
1. Why would the NIH fund a study that takes only one component of a treatment, the components of which were explicitly designed to be synergistic?
Dr Bob Baughman (U.Cincinatti) said he is going to start a trial of the Marshall Protocol in August. Now his part of the 'trial' is to test minocycline in the patients. A different research group (reportedly headed by Gary Hunninghake) is going to test the action of Benicar on Sarcoidosis patients.
2. Are representatives of the NIH capable of recognizing the limitations of scientific assertions in "controversial" areas?
The recent publication of an informational sarcoidosis pamphlet, and subsequent refusal to change its contents in the face of strong evidence to the contrary suggests otherwise.
3. What responsiblity does the NIH have to patients to communicate and confer legitimacy on new treatment options especially for conditions for which there is little "official" knowledge?
Paul
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / MP Gallery
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Dr Trevor Marshall
Research Team
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Posted: Sun Jun 12th, 2005 14:54 |
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PaulAlbert,
Let me give you snippets from Dr Zerhouni's perspective, those which he publicly shared at the COPR meeting before the presentation I made in Bethesda.
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"The NIH must be the most trusted source of scientific advice"
#1 goal: Whatever NIH says is not tainted
"The biggest failure is not to try"
"You don't know where the next breakthrough is going to come from, and when it comes, it is usually big"
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So it certainly seems he should be able to rein in the NHLBI, but apparently he does not have the power to do so. Or maybe he just doesn't understand how big this problem really is. Sometimes truth is stranger than fiction
..Trevor..
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Dr Trevor Marshall
Research Team
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Posted: Sun Jun 12th, 2005 15:37 |
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Paula Polite, who is/has-been a member of the NHLBI Advisory Committee, has just made an announcement to the patients who are attending the Denver conference, warning them that they should ignore anyone circulating around the conference floor (eg Meg and Belinda) and only believe what they are being told by the WASOG pulmonologists.
It is always possible she is doing this independent of NHLBI, but unlikely. In any case, the NHLBI staff present (Dr Herbert Reynolds) did not object.
So it seems the NHLBI are still trying to 'tough it out.'
..Trevor..
ps: The "circulating around the conference floor" language was a bit grandiose. The Denver patient conference attendance is low, only around 50...
Last edited on Sun Jun 12th, 2005 16:01 by Dr Trevor Marshall
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Sue from St. Louis
Member in Phase 2
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Posted: Sun Jun 12th, 2005 16:12 |
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I Goggle searched Bernie Mac and couldn't find a way to contact him about the MP research. I did email Oprah and asked her to have another show with Dr. Marshall and colleagues as she did Karen Duffy several years ago.
A question I have is as follows: What will it take for the NIH to recognize the research and anecdotal data that Dr. Marshall has been conducting and gathering?
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Sarcoidosis/CNS 1,25D48, D2511, MP 9/06, Mod Ph2 11/07 Synthroid, Diclofenec, Cymbalta, Wellbutrin, Lasix (as needed), amitriptyline, NOIRs, cover-up, low lux home
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Dr Trevor Marshall
Research Team
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Posted: Sun Jun 12th, 2005 16:32 |
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Sue,
The moderators are in (indirect) contact with Bernie Mac's family.
We are no longer just gathering anecdotal data. Now that we are working with so many physicians, we are getting verified data and case notes. IMO, the analysis of this data will obviate the need for additional phase 2 efficacy studies. And phase 3 studies are rarely carried out in seriously ill patient cohorts.
I have applied to NIH for three research grants and been knocked back. Until you get into the "old boys network" at the NHLBI it is almost impossible to get any money for studies.
Not being part of the 'old-boys-network,' or even being of the supplient mindset needed to join that august institution, I have had to look for other ways to help patients influence their prognosis
..trevor..
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wytnez
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Posted: Sun Jun 12th, 2005 17:31 |
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Dr. Marshall,
Aren't the Pulmonary Doctors who are conducting the studies required to follow the Belmont report?
The Belmont Report
The Belmont Report sets forth three basic ethical principles for the conduct of human subjects research:
- Respect for persons
- Respect individual autonomy
- Protect individuals with reduced autonomy
- Beneficence
- Maximize benefits and minimize harms
- Justice
- Equitable distribution of research burdens and benefits
Who will sit on the IRB and monitor their proposed studies? Why would they just take one part of the MP knowing that all componants need to be followed such as sunlight/bright light avoidance and try and do a study without all the componants?
To me that is not respect for the human subject. Nor does it maximize the benefits of the study. I am very much afraid of the medical community right about now.
Trevor is there anyway that you could communicate to the IRB who has approved those two studies and present the science to them? It seems to me that they are the ones responsible for having someone competant in the area of science to assist with the review of issues which require expertise beyond or in addition to that available on the IRB.
Forgive me if I sound naive' but I just don't understand.
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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Dr Trevor Marshall
Research Team
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Posted: Sun Jun 12th, 2005 18:05 |
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Saj,
About a year ago, Meg did write a detailed submission to the Medical University of South Carolina (MUSC) Institutional Review Board (IRB) warning that Remicade suppresses the body's ability to fight intra-cellular bacteria, and of the consequent danger of using Remicade in a Sarcoidosis cohort. She was ignored, we were told the IRB had been forwarded the letter, but we never heard anything else. I wrote to the MUSC President, and was told that Dr Judson is a very well-respected, competent, member of the MUSC medical staff
Marc is also a member of the organizing committee for the recent ATS conference.
His Remicade study results:-
http://tinyurl.com/9aqmy
include a patient who caught a type of lymphoma (cancer) previously known to be associated with Remicade therapy:-
http://tinyurl.com/ahukn
Dr Judson's paper, however, was glowing in praise of Remicade's safety, even though this larger study (reported at ATS) found the drug unsafe for sarcoid patients
http://tinyurl.com/a8jyz
So you have every right to be worried with the way the Sarcoid pulmonologists are behaving. I can't even tell you much of what I have seen over the last few years, you just wouldn't believe it...
..Trevor..Last edited on Sun Jun 12th, 2005 18:19 by Dr Trevor Marshall
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wytnez
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Posted: Sun Jun 12th, 2005 18:45 |
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Dr. Marshall,
Wow! I am dumbfounded. It feels hopeless at times. Even though I feel good and I am doing really well on the MP, I feel for the people who don't have or can't find a physician to treat them with this protocol. I am no longer thinking of myself. I am afraid for the lives of people who don't know that they have options. There has to be something that we can do to stop the madness.
What about the IRB that is going to oversee Dr.Bob Baughmans trial of the Marshall Protocol? Will there be some type of contact made to inform them of the risk of not following the protocol to the letter? I hope they inform the patients about the importance of avoiding light while on minocycline and protecting your eyes. What about avoiding Vit D? To me this does not represent the patients best interest if the protocol is not going to be followed to the T. Where did Bob get his information from regarding the Marshall Protocol? You can't just use minocycline. ( Oh what do I know, I am just a patient who feels wonderful since being on the protocol for about 138 days whose primary symptom wheezing is almost all gone. )
And Gary Hunninghake, I wonder if he is aware of the dosing that makes Benicar effective in Sarc. This is getting on my nerves because it seems so simple to me. I realize that it is not. One thing for sure, I don't want to suffer just because some Doctor wants to make money. I hate to say it but their eyes will only be opened if this disease was to affect one of their own. I wonder how much Prednisone or Remicade would be prescribed then. (I don't wish that on anybody...just venting)
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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shamutooth
Member in Phase 3
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Posted: Sun Jun 12th, 2005 19:58 |
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In reference to Lida's and Dr. Marshall's comments about shutting labs and websites down, I think we all need to be printing the info on this site out, and possibly finding other sources for our meds(foreign pharmacies that don't need prescriptions). I also think we need to contact Montel William's show, because he says he contracted his disease( I think it is Parkinson's)from a flu vaccine,which IMO could possibly have been from CWD bacteria contamination. Maybe we can take the mail campaign to his website too  SamLast edited on Sun Jun 12th, 2005 20:00 by shamutooth
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MCS,CFS,IBS,insomnia,anxiety,depression,started Doxy July'04, MP Sept. 04; Benicar 40mg 3/day; Phase 2 started 2/2/05; 6/28/05 D results 25D=29,125D=47;11/13/05 25D=10
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Dr Trevor Marshall
Research Team
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Posted: Sun Jun 12th, 2005 20:24 |
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Sam,
There is no need to print out the material on these websites. Just concentrate on recovering your health - that is the most important thing each one of us can do...
The thing that TPTB are finding toughest to deal with is the huge number of folks who are recovering...
..Trevor..
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rc45guy
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Posted: Sun Jun 12th, 2005 21:08 |
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How many found it non-coincidental that the statement "...Dr. Zerhouni's focus since becoming NIH director is aimed at speeding the discovery and clinical application of new prevention strategies, diagnostics and treatments." does not mention the word CURE anywhere?
I think a $28.6 BILLION budget, and the underlying support structure that depends on this budget (jobs, manufacturing, goods/services, etc), will never have any intention on curing any disease. Furthermore, I don't believe they will ever want to include an alternative view that is or could approach a cure unless there was more money to be made from it than "treating" the disease.
This is why, while Trevor and a few others might want to be on an NIH board/committee and they are selfless and have all the right reasons to be on the board, I don't think it's in the NIH's best self-serving interests to have them there.
Last edited on Sun Jun 12th, 2005 21:10 by rc45guy
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Dx - Sarc Mar03, CFS, DM1 Jan89, insulin pump, 6.8 HbA1c; No add'l meds; D tests May05:1,25D=55 & 25D<=5, avoiding light & D, NoIR 207s, Bolle100s, Phase 2
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paulalbert
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Posted: Sun Jun 12th, 2005 21:16 |
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As a matter of principle, I don't have anything against third-party feedback. After all, it's how medicine replicates and validates claims. I just worry that researchers won't follow this protocol to the letter, or, more importantly, even if they do, patients will drop out, invalidating otherwise significant findings.
I suspect this is a bigger issue than we give it credit. We are a self-selecting group-- highly motivated, most of us at least reasonably happy with our results. But there are a lot who do not share our motivation or patience.
A lot of my personal doctor's patients have given up because they experienced a lot of herx, and they lost motivation to continue.
The transformation brought on by the MP is not instantaneous and people need a great deal of faith especially in the early going that they will get better. This is made all the more difficult in the absence of approval from the medical establishment. Very few people make the choice to suffer through treatment when they are told by authority figures that it is unsupported by science and essentially pointless.
If the NIH wants to resolve a "debatable" MP related claim through replication, why not a double-blind, placebo-controlled measure of 1,25-D and 25-D ratios of sarc and non-sarc patients? What if a study tried to correlate the extent of Hypervitaminosis D and degree of physical infirmity?
I'm not an expert on this subject, so I really can't say with certitude this is a proper course....
Paul
p.s. I'd like to add that it may not be a very good strategic move to question the integrity of representatives of the NIH, nor do I think it's particularly true. I believe that these folks have good intentions. No one in the medical establishment wants to end up on the wrong end of science. That's not to say a person ought not to be outraged.Last edited on Sun Jun 12th, 2005 21:30 by paulalbert
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / MP Gallery
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Dr Trevor Marshall
Research Team
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Posted: Sun Jun 12th, 2005 21:19 |
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rc45guy,
So will you pose a question about Cures then?
I personally think that this issue is the NIH's achilles heel. If the public realized that the NIH is not structured to find cures, that its budget is spent on 'advancing medical science', and not on finding cures, that they might start pressing for change...
This was after all the thrust of the Foundation's submission to Dr Zerhouni - cures, and NIH's inability to find them, or even recognize them... and the lack of structure to properly investigate them.
..Trevor..
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Morris W. Milnes
Member
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Posted: Sun Jun 12th, 2005 21:21 |
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This talk is starting to scare me. I'm betting my life on this. My pulmonologist had seen that with the usual treatment I was not going to recover and said as much. I am not disabled and even early on on the protocol I seem to have at least stabilized.
Now that I have found something that works it makes me extremely angry that a group of money grubbing jerks want to interfere with my recovery for monetary gain!!!
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Diag: Sarcoidosis by median stenoscopy 1986. VitD tests 25D=16/ 1,25D=37/ Avoid Vit D 11/04/ Benicar 4QD/ Started Mino QOD 4/6/05 7/06 1,25D=21, 6/07 25D <7 Mag Citrate 1 tsp daily. Calcium 1200mg daily, Vit C 250 mg daily,Synthroid.1mg daily.
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wytnez
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Posted: Sun Jun 12th, 2005 21:23 |
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Morris,
Is your Pulmonary Doctor prescribing the MP for you?
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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Dr Trevor Marshall
Research Team
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Posted: Sun Jun 12th, 2005 21:23 |
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Paul,
EXACTLY - there are many useful studies which can be done - it would be great to be able to sit down with TPTB and help plan them.
However, the concept that any studies can be planned without the input of myself, or one of my colleagues, is ludicrous. As you say, they will almost certainly fail. In most cases that will serve the interests of TPTB, and not of the patients.
..Trevor..
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Morris W. Milnes
Member
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Posted: Sun Jun 12th, 2005 21:31 |
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No, Wytnez
He wouldn't take a chance on it. My GP thinks it makes sense, but won't take a chance on it. I drive to another state for a doctor.
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Diag: Sarcoidosis by median stenoscopy 1986. VitD tests 25D=16/ 1,25D=37/ Avoid Vit D 11/04/ Benicar 4QD/ Started Mino QOD 4/6/05 7/06 1,25D=21, 6/07 25D <7 Mag Citrate 1 tsp daily. Calcium 1200mg daily, Vit C 250 mg daily,Synthroid.1mg daily.
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