Discussion in 'Upcoming ME/CFS Events' started by Sushi, Jul 30, 2014.
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Highly effective? Any actual data?
@Sushi thanks! Isn't the internet great hopefully anyone in the world will get access.
I d'm not sure about Teittlebaum but I know Dr Nathan was involved in the Methylation study in 2009 with Rich Von K
When I saw the title of this thread I was excited.
What a let down.
The only research I found had no control group and made leaps of logic when interpreting the results.
A pilot study is for proof of concept and to set the direction for a larger scale study. It may include a control group but does not need to as a pilot study.It can do the following for feasability:
Aspects of Feasibility that Can be Examined with a Pilot Study
Study ComponentFeasibility Quantification
ScreeningNumber screened per month
RecruitmentNumber enrolled per month
RandomizationProportion of screen eligible who enroll
RetentionTreatment-specific retention rates
Treatment adherenceRates of adherence to protocol for each intervention
Treatment fidelityFidelity rates per unit monitored
Assessment processProportion of planned ratings that are completed; duration of assessment visit
I'll try and find the reference, I belive it was prohealth, that said this was after the pilot study.
ETA I found it. The following is the part referring to the pilot study. They call it a project, not a scientific experiment. The other you referred to was a paper. I'm not sure if there were any published studies.
The full article is at
What I am saying is at this point it's a hypothesis which may or may not be correct.
Was that methylation study completed and published?
This radio show sounds interesting.
Yep study was completed and published the only one by Rich that I know of. However it was a pilot study of 30 people over 6 month period. Unfortunately I don't think Neil Nathan has gone on to any larger study's on this subject. In fact this is the only study of Nathan's I can find. I think he's more practitioner than researcher. But obviously has lots of case work.
From Dr. Neil Nathan:
Hmmm, I went to Dr Nathan for a while and I have intestinal problems and none of this was considered.
I'm now being treated by Peta Cohen and she "gets" the intestinal health issues.
Really? People still trust Tietelbaum?
Still might be interesting to hear. I also thought Tietelbaum's theories are considered outdated but haven’t really followed him for a while.
What is the trust issue?
A good question was asked here. That was why should people be cautious? Other people also ask, where is the data?
The 'correct' answer on the effectiveness of Dr Teitelbaum's protocol likely depends on two factors:
Firstly if one is thinking of 'fatigue' based CFS, or secondly if their understanding of CFS is a unique disease process resulting in a life long neuroimmune illness.
Depending on one's views, the response would either be mild interest (or disinterest) in what Dr T believes helps, or perhaps smartly walking in the opposite direction and not stopping.
Dr T operates what he calls, the 'SHINE' protocol, explained briefly below:
One quote below:
'In our published research study, over 90% of patients improved with treatment, with an average improvement in quality of life of 90%'.
This all looks perfectly innocent, if one is treating chronic 'fatigue'. To be fair Chronic Fatigue Syndrome to some people, is simply fatigue and a few other symptoms. (This is how the CDC view CFS, and how the IOM view the soon to be further ostracized ME).
Looking objectively at SHINE, one may ask quite how in only 10 weeks using Dr T's protocol, patients with CFS can be improved in 9 in 10 cases, when globally CFS remains an incurable chronic illness that the world's top researchers can't or won't do anything about. Of note, at 90% turn around using SHINE, even the biopsychosocial camp can't get anywhere near this for people with unexplained fatigue using CBT, exercise and other life-style changes.
Without looking into it too deeply, SHINE appears a near miracle and that is all we need to recognize. A near miracle is never to be taken on face value.
The exceptional patient responses to the S.H.I.N.E. treatment protocol are probably amounting to little more than:
1) Potential exaggerated claims by the inventor of the product.
2) Not reflective of people with 'classic' ME but people with 'chronic fatigue' and not CFS equaling or exceeding Fukuda criteria.
3) Initial responses in the short term when a patient feels something positive is happening in their lives, that don't last.
I'd go with number 2 mixed with 3.
The SHINE protocol, realistically does not even begin to discuss the consequences of chronic untreated CFS, and CFS subsets.
*Immune suppression not explained by nutritional deficiencies.
*Arthritis and other damage to tissues from chronic Inflammation including vascular and brain walloped by long term oxidative stress.
Undoubtedly addressing any nutritional deficiencies (if present) may reduce fatigue. That is a sensible approach to any illness, however a 90% improvement seems a little unlikely and sounds more like dodgy marketing.
In cases of very high responses to an 'intervention' involving near miracles it appears there is always a personalized protocol of some sort that the patient must adopt (that no other product has), however a patient can reject this and simply continue a common sense approach. Follow rules of good nutrition, avoid stress, try and get as good sleep as possible etc. With regard to ME and CFS, a crucial observation is if patients do manage this, they will still remain sick and disabled which is why they have a chronic neuro immune illness of unexplained origin!
In fact, many people with CFS and ME spend hundreds of dollars on nutrition per month, and still remain severely affected, infected and disabled. (Some even feel worse on high dose supplements and can't tolerate them). Remissions and relapses include tinkering with hormones, which is in itself risky if levels aren't measured first. Also, low cortisol in ME CFS, is centrally medicated (HPA dysfunction), so in effect unfix-able with cortisol supplementation. This was known decades ago by researchers who tried and failed to improve CFS patients long term by increasing their poor cortisol levels.
Knowing this, this would explain some ME CFS sufferers objections to Dr T's potentially inflated claims when it comes to their experience of ME CFS patients radically improving. We then go in circles with counter claims, all because of what CFS is, and what CFS means to each individual, researchers and physicians.
Sadly CFS and ME means many things. To many people, CFS ME doesn't mean much at all, precisely because it remains 'fatigue' centric by key players in power who ultimately have decided the fate of millions of sickly people hobbled by their condition. This is not the 'fault' of Dr Dr Teitelbaum or other people getting a little over excited about attempting to reverse chronic fatigue states. The counter argument is, CFS physicians should be more responsible and stress that CFS is not currently treatable by anyone, and that it can be very disabling.
It's fascinating, yet cruel to see how wider societies rejection of individuals sufferance (due to the label of ME CFS), tends to push ME and CFS patients into the fringes of medical practice for 'help', a place in which they often remain untreated, and sometimes given further false hope be it through psychological or biomedical therapies that are untested, and unproven.[/quote][/quote]
I'd add a "Y" to that S.H.I.N.E.
Y= You're own fault if you're still sick after 10 weeks. You're obviously doing something wrong or thinking the wrong thoughts.
Seriously, I thought Dr T. was thoroughly discredited years ago. It's sad to see Dr Nathan hooked up with this hype. I don't understand why he didn't continue research on the methylation treatment protocol. If he's not sure how to organize a useful study, he could certainly find out.
Recently I read a post by @Jonathan Edwards where he explained that study design was a standard part of medical education. He also wrote about purchasing very expensive medications out of his own pocket in order to pursue his research. Why don't we see more of this kind of initiative?
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