Changing the paradigm of progressive deterioration with multiple sclerosis. An Australian longitudinal cohort study reports remarkable improvements with lifestyle change
If you were diagnosed with an incurable neurological illness that causes progressive disability, and heard that not only could you arrest the decline but actually improve your health over subsequent years, most people would assume this was the result of some wonder drug, or risky procedure like bone-marrow transplantation. It would probably come as a shock to hear that a large cohort of people with such an illness, multiple sclerosis, could actually improve their condition by around 20% over five years simply by changing their lifestyle. This is exactly what a new study has found.
Researchers from the Emergency Practice Innovation Centre at St Vincent’s Hospital Melbourne have followed a large cohort of 274 people with MS who completed baseline questionnaires prior to undertaking a live-in week-long course promoting a plant-based wholefood diet plus seafood, regular exercise, adequate sun exposure, and stress reduction.
As has been shown for heart disease, such an ultra-healthy lifestyle resulted in dramatic improvements in the condition of the cohort, who were on average 18% better physically, 23% better mentally and 20% better in overall quality of life five years later.
Said Professor George Jelinek, lead researcher in the study, who himself was diagnosed with MS in 1999 but has adhered to the program and remains well:
“We know that MS is a lifestyle-related disease, so it makes sense to modify the risk factors that increase the risk of progression, namely Western diet, lack of sun exposure, lack of exercise, high cholesterol, depression, smoking and stress.
When people make these changes, they experience major improvements in their quality of life, and their physical and mental condition begins to improve. We were impressed to see the improvements continue to grow over five years, and look forward with interest to the ten year analysis in due course”.
The study, published in the international journal Neurological Sciences changes the paradigm of progressive deterioration with MS; physicians treating people with MS who use only disease-modifying drugs need to strongly consider engaging and empowering their patients in this lifestyle change.
An International Study is currently underway…
HOLISM SURVEY LINK
Further reading:
- Health-related quality of life outcomes at 1 and 5 years after a residential retreat promoting lifestyle modification for people with multiple sclerosis. Hadgkiss EJ, Jelinek GA, Weiland TJ, Rumbold G, Mackinlay CA, Gutbrod S, Gawler I. J Neurol Sci DOI 10.1007/s10072-012-0982-4 [PDF Download]
- Effect of a residential retreat promoting lifestyle modifications on health-related quality of life in people with multiple sclerosis. Li MP, Jelinek GA, Weiland TJ, Mackinlay CA, Dye S, Gawler I. Qual Prim Care. 2010;18(6):379-89. PMID 21294980
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About Mike Cadogan
Interesting research. Although a healthy lifestyle is a good recommendation for basically all diseases, I am curious as to a few points.
1. How did this group stay so compliant when lifestyle modification is generally not adhered to?
2. Or was this group not compliant and this was entirely the result of a 5 day live in retreat (seems unlikely)
3. Is ‘self reported diagnosis of MS by a neurologist’ a valid research diagnosis? MS is overdiagnosed by MRI alone -- this could include a group of worried well who have seen a neurologist for potential MS with MRI findings alone
4. Is a study performed by a practitioner who a) has the disease in question b) is a very vocal advocate of lifestyle modification and c) publishes a book about it and so has a pecuniary interest in the outcome of this research any less compromised than drug company sponsored research?
5. Have these patients self-selected for being very involved in their own health care? They still had disease modifying agents and steroids. What was the social makeup? Are these people with means who can both afford a retreat and time off work? Do they therefore have private healthcare and prompt access to a neurologist?
This is potentially useful research that at this stage just leaves lots of unanswered questions. ‘If it looks too good to be true, then it probably is’. RCT with truly unbiased researchers would help.
On the other hand, healthy lifestyle shouldn’t do any harm and unless we have a better option then it wouldn’t be unreasonable to recommend this to every patient with MS. Minus maybe the meditation and the crystal therapy.
I could not afford the week live in (never mind the trip to Australia). I did research lifestyle and diet changes on my own. I stay on track quite well. You have to choose your priorities, be healthy or eat garbage. Simple as that.
This was put together by a doctor who has ms, whose mother had ms and who follows the recommendations.
I won’t rehash the excellent arguments put forth by Duncan above, but, suffice it to say, I have serious doubts that this study has any validity whatsoever. In addition, while the suggestion of a healthy lifestyle should offer no harm, there is potential that this kind of research can lead to psychological harm of MS patients, in that it may lead to a “blaming the patient” mentality among caregivers (“because everyone knows MS is treatable through a healthy lifestyle”). MS is not Fibromyalgia, it is not Chronic Fatigue Syndrome. It is a heartbreaking progressive neurological condition where real CNS pathology leads to disability and death.
Frankly, I’m disappointed.
Responses to Duncan and BAF.
1) I would suggest your assumption that people cannot adhere to lifestyle change suggests you have a paternalistic view of patients and their ability to influence their own health
3) I wonder why you think people’s diagnosis of MS is somehow to be doubted. That always seems to be the attitude of medical practitioners who see recovery when not expected ie the diagnosis must have been wrong!
5) You may be correct that this group self selects. What that means is that highly motivated people can influence their won outcome. As the neurologists rarely contribute anything other than a prediction of decline, I can’t think that rapid acces to a neurologist could influence outcome.
On what basis does BAF suggest the study has no validity. could you explain this in research terms>? A European neurological journal seems to disagree with you. Or is this just a personal opinion influenced by scepticism and lack of knowledge?
What sort of psychological harm to you think can come from hope and optimism and evidence based recommendations? Surely psychological harm comes from people such as yourself who would prefer to tell patients “Don’t worry , there is nothing you can do, so you don’t need to feel bad that you personally are to blame?” Such an attitude is so out of date I thought I would never hear it again.
How about accepting there may be things you don’t understand (like research) and that your attitudes and opinions are out of date, and damaging to those who wish to influence their own outcomes.
PS. We know what MS is.
I have had MS for 14 years, and was diagnosed by two neurologists including New Zealand’s MS specialist after an MRI, so I think I can safely say that I have MS. I can personally relate to the previous comment that MS is a “heartbreaking progressive neurological condition”. I have never been offered drug therapy apart from 2 courses of steroids and had minimal neurologist support after the initial diagnosis. I had been slowly deteriorating until 2 years ago. Heartbreaking indeed.
However, I have been following this healthy lifestyle for 2 years and the results have been remarkable. I comply because there is no other option available to me, and also because it is working for me. I also have the very valuable support of my GP.
I have attended a retreat but it was only 3 weeks ago, so I can safely say that my improvement is not “entirely the result of a 5 day live in retreat”.
How disappointing -- and how unscientific -- to see idiom and cliche creeping into what should be serious analysis of scientific research. The phrase “if it looks too good to be true, then it probably is” has no place in medical critique . There is only “true” or “not true”.
Looking objectively at the results of this 5 year study into lifestyle modifications on progression of MS, it certainly seems “true” that the people in the study enjoyed a remarkable improvement in physical and mental health. That is “truly” astonishing given the normal paradigm of deterioration with MS.
I couldn’t agree more that we need an RTC to provide more evidence. That of course costs money, and with no drug company likely to benefit it is hard to imagine where the funding will come from.
In the meantime we have the OMS Retreat study by Professor Jelinek and his team -- a study which will become increasingly significant as time goes on. I applaud their efforts and suggest we treat it with the medical respect that it deserves.
To the doubting Duncan I share a few wise words:
1. You wonder why we are compliant with lifestyle modification? When you have been diagnosed by a neurologist with MS, after symptoms have been analysed, and medical tests undertaken including MRI showing the sclerosis, then one certainly has a vested interest in pursuing opportunities that may halt progression of their deteriorating condition that is typical of MS. Once MS is part of one’s health makeup, a lifestyle change is called for, and of course this is not a temporary change, but a permanent change for the remainder of one’s life. You want to ensure that your MS doesn’t progress, so being committed to the specified lifestyle modification that has already shown results for others over the past decade, is more than just a choice, but a necessity – and so ‘compliance’ as you put it, becames the new way of living.
2. I would suggest reading the published medical article before asking question number 2, as the answer is in it.
3. To correct your ascertion that MS is overdiagnosed by MRI alone, this is actually a false claim you make here. For many decades MS has historically been under diagnosed, not over diagnosed as you put it. Many have endured much of their life with differing symptoms before the diagnosis has been made with the MRI film giving the clear vision of white lesions on the brain or spine. Always wise to base claims on fact not fiction doubtful Duncan! Pubmed is a good place to start reading.
4. Similar to the late Professor Roy Swank who dedicated his medical career to studying multiple sclerosis, as this was his life’s passion, so too do we have dedicated professors and medics who have worked tirelessly in researching ways to treat MS and dedicated their working hours to discovering new information and sharing that with those of us concerned with MS. Many MS patients agree that having a researcher and/or doctor who actually has the very same condition that they have, and who has dedicated their working life to study is a true blessing – “they actually get it!”. MS is very hard to comprehend when you don’t actually have it. I can tell you even my own neurologist doesn’t “get it” when I tell him my MS symptoms.
5. These questions are irrelevant to this study. The study is about result of the prescribed lifestyle change. Best to read the article!
ok -- the article “Lifestyle Modification And Multiple Sclerosis” fails to strike me as a negative article and im possibly failing to read it correctly but i do not see the writer attacking the judgement calls prescribed by Dr Jelinek -- im sure im missing something very clear and obvious here but for now i see the writer as a rather unbiased re-layer of information -- maybe someone would direct me to the aforementioned negative comments regarding this study?
Duncan -- i am assuming you dont have MS? If you did you would know that with MS comes a desire that screams “lets do what it takes” -- i think those who have been on the course are not there for a health retreat that will last 5 days and be concluded at its conclusion, but rather have made a conscious decision to change their circumstance and defeat this horrible disease that is currently enveloping everything about their way of life. The things they did before they have now lost their ability to do and they (assumed, yes) are all very serious about regaining some control of their spiraling and failing lives (why waste the money attending these retreats and not have that desire?). Dr Jelinek has a retreat that not only delivers a healthy positive message but restores some of the crushed hope the medical community appears so happy to be a part of today? Why do they do this? I dont know but im sure if any one of them actually had experienced MS, then they would speak very differently about MS to further patients. Dr Jelinek has been there. Its obvious his is not a money making endeavor but a genuine interest to help those who suffer from an experience his mother had, including his own. Both those reasons are for some more than enough to not wish this lifestyle repeating again upon your worst enemy.
you ask about -- ‘self reported diagnosis of MS by a neurologist’ a valid research diagnosis? Correct me if i am wrong but from my own experience, there is a huge reluctance from the medical community to positively diagnose this condition -- those who have it usually know well in advance of diagnosis and are not found later on to be incorrect -- those who think they have it and later through MRI scrutiny are proven not to have it are far and few between who enter into this retreat, again lets assume they are in the latter category, im sure that over time having MS or not would come to light and they would if proven not to have it -- be removed from the study? Remember -- going on this retreat is not for those wellness worriers -- but is a final step (now much more proven) for those where the medical community has failed in providing an alternative.
I cant help but feel like you again are attacking the credibility of the man who lost a mother and suffered this disease himself by asking Is a study performed by a practitioner who a) has the disease in question b) is a very vocal advocate of lifestyle modification and c) publishes a book about it and so has a pecuniary interest in the outcome of this research any less compromised than drug company sponsored research? Its very much like the child who does not like what they are hearing so s/he closes their eyes, sticks their fingers in their ears and says la la la la la la la la all the while shaking their head and thinking to themselves -- i cant hear you so it never happened.
finally you ask: Have these patients self-selected for being very involved in their own health care? They still had disease modifying agents and steroids. What was the social makeup? Are these people with means who can both afford a retreat and time off work? Do they therefore have private healthcare and prompt access to a neurologist? I think “these people” all have one thing in common -- and that is MS, the cross section of individuals comes from all walks of life, and sadly not all motivate folk can afford this study. I dont believe an unproven study to be currently funded by health insurance, but with time it shall be and the group will widen -- there may be more failures with a wider group but also more success stories. Prompt access to a neurologist gets them where in todays day and age? Re confirmation that they cannot help you?
Im sure my reply will throw up further debate, but in a crux -- these people are there because of a chosen desire to be there. The retreat isnt run by someone who is motivated by making money, and maybe you need to met him to realise it. The results are admittedly based upon a group who desire a better life -- but who doesnt have MS and wish for a better life. Self diagnosis is a (very small) problem but im sure, that this is weeded out over time…. we must remember this retreat makes it apparent to others that we do not live our lives appropriately as we should, with the mass devouring of preservative filled foods.
I will leave it here for now.
Interesting stuff from “Duncan” and “BAF”, all very valid questions. It would be a useful exercise to even begin to design, in one’s imagination, a proper, powerful RCT on this subject, but don’t hold your breath -- it won’t happen. The disease is NOT amenable to studies controlled by blinding of either subjects or researchers, unless it’s limited to drug trials. Swank’s original Lancet paper was a similar, longitudinal study, within which the diet-compliant patients did better than the less- or non-compliant ones over more than three decades [later extended to five decades], but it drew similar negative reviews from the “scientists” because it couldn’t be assimilated into the Cochrane-driven model of assessment. I sincerely doubt that any ethics committee would countenance a RCT to test the validity of the benefits of a very low saturated fat diet in MS now.
I met George Jelinek at the recent MS Retreat in NZ -- a more skeptical guy would be hard to find -- it’s no coincidence that his chosen field is Emergency Medicine, a specialty that depends on RCTs, and for which he was editor of the Australian journal . It might be better to read his book [Overcoming Multiple Sclerosis], since it’s an extremely readable example of the very best “physician as a patient” writing you will find. In it he recounts his exploration of the “science” of known remedies and treatments, and provides an essential resource tool for sufferers and their physicians.
MS likely results in multiple damaged, repaired and alternate CNS pathways -- all of them “second rate” in function and fatigue-resistance, compared to their original versions. If meditation is too “touchy-feely” for you, then any measures which quieten unnecessary “traffic” in the CNS will be better than none at all.
The role of VitD is extremely interesting, given that it features heavily in current thinking on many disorders that have an inflammatory phase [not just the auto-immune ones], and the recent report [ http://www.ncbi.nlm.nih.gov/pubmed/22190362 ] of a highly inheritable version of MS associated with abnormal copies of a gene associated with the encoding of the VitD-activating enzyme.
The rest of the measures suggested in the book are well supported by evidence. My wife found its predecessor in our local library 3 years ago. It pushed nothing that seemed like a personal, or revenue-gathering agenda, and for that reason alone, I started to read it too.
Disclosure -- retired GP [MBChB Glasgow 1970, MRCP 1972] married to a muliple sclerosis sufferer who first developed signs of the disease 37 years ago. I’ve followed the literature closely over the passing decades until retirement in 2006, but admit to growing skepiticism with RCTs, especially the manufactured, “one-size-fits-all” meta-analyses that result from the chase for “number power”.
Message to Duncan.
I too used to be ignorant, sceptical and close minded.
Then I got MS.
Later I got Professor George Jelinek’s MS book ‘Overcoming Multiple Sclerosis’.
Later still I got my legs working again and my vision restored.
After following what I was thought was a hippie trick -- meditation.
After following his dietary and lifestyle protocol for MS.
If you get MS one day yourself Duncan, try to recall the researchers’ names and what they profess in the article.
You’ll need this information.
Sincere apologies.
Lifestyle change is well recognised to be well complied with. Or else we’d have fad diets, nicotine patches, weightwatchers, and increased taxation on cigarettes and alcohol. Which we don’t have.
People without a disease are of course not qualified to comment on the validity of research into that disease.
Studies without verifiable inclusion criteria have unquestioned validity.
Inadvertent bias does not occur in research.
Health outcomes are well recognised to be equivalent between different populations, particularly social class.
Quite frankly, the emotive diatribes above (not all of them, but most of them) have no place in any rational debate. I am asking valid questions.
That does not mean that I think that the research is incorrect, that I am attacking the character of the researchers, or that I am paternalistic.
The rebuttals above are, quite frankly, rubbish (again, not all of them, just most of them). I am more than happy to engage actual debate on the points I have made but to infer that I have made a personal attack on Prof Jelinek, the validity of the outcome (again, the outcome may or may not be valid, I think there are multiple potential flaws in the methods), or the plight of MS sufferers is just screeching.
I find it hard to believe anyone would argue with the points about access to healthcare between different income/social groups (the Black report in the UK, ‘closing the gap’ between indigenous/non-indigenous Australians, a large body of other published material). This is quite frankly not in question. The only real question is what makeup the study group had and if this was representative.
Drug company sponsored research has a statistically significant impact on study outcomes. Doctors are well established to be influenced by marketing by drug companies, even with the best intentions. Similarly, a vocal advocate of a particular therapy (particularly if they have had good personal results with that approach) is NOT an unbiased observer, even if he wants to be. This does not mean the results are invalid -- it just means they are potentially less objective.
As for compliance -- there is a great deal of evidence that compliance is hard with any lifestyle modification. People with heart attacks, strokes, emphysema and cancer still smoke, don’t exercise, are overweight. Type II diabetes is predominantly a lifestyle disease with a very strong association with obesity. Maybe you are suggesting people with MS just have more willpower?
Addendum -- MRI well established to overdiagnose MS
http://www.ncbi.nlm.nih.gov/pubmed/16240352
http://www.ncbi.nlm.nih.gov/pubmed/16400831
http://www.ncbi.nlm.nih.gov/pubmed/19546108
I would say that a specificity for MRI findings of as low as 29% (but big range, depending partly on diagnostic criteria) would support my statement of overdiagnosis pretty conclusively.
further addendum
wiki summary of the Black report: and significant health outcome disparity between social/income classes
http://en.wikipedia.org/wiki/Black_Report
worse prognosis in MS with lower social class:
http://brain.oxfordjournals.org/content/113/6/1597.short
So if the group attending the retreat are not representative (higher social class e.g. cost to attend, missed work income) then this remains a potential source of bias.
As a last point -- on re-reading the study in its entirety, several of the points I have made are brought up in the ‘limitations’ section.
Just to satisfy my own curiosity,
-- do any of you lot appreciate Jenny McCarthy’s nuanced scientific debate? She’s really great, isn’t she?
-- it’s a shame about Andrew Wakefield. Great guy. At least he published his work in time for me to prevent my indigo child being poisoned by vaccines. Don’t you agree?
PS do not feed the trolls
In response to Duncan’s last posts -- you’d hardly expect a group of MS sufferers who had come up with the funding and time to attend such retreats, to attempt to answer your criticisms without some rancour, would you? I’m glad you recognise this in your responses.
I’d just direct you back to what the paper represented -- a longitudinal study of a non-representative, self-selected, self-reporting group who, on analysis, appeared to NOT deteriorate over time. It says “hey, this is interesting -- let’s see what happens as more time passes”. It claims nothing else, I think -- please correct me if I’m wrong.
When you say “drug company sponsored research has a statistically significant impact on study outcomes”, can we assume that you mean “the influence of drug company sponsorship affects study outcomes” and what relationship has that to the study in question?
The Wakefield debacle might have been avoided had rules on disclosure of interests and availability of patient data been much more vigorous at the time. Would you be prepared to declare your interests?
I mean that non-objectivity can affect results as per my original comment. I have no relevant conflict or competing interest here. I am simply pointing out limitations of a study. The same thing I would do with any study on any subject. I expect if Prof Jelinek read my comments he would appreciate the input and consider if they had impact, make explanations if appropriate, and adjust future research design if needed. This is how we develop higher quality research. I am also certain he would not consider any of my comments as offensive (or even controversial).
Duncan -- i find it hard to believe you are a lone ranger here, with no invested interest, just quietly standing on the side lines waiting to interject with nothing but relevant debate points. Do not feed the trolls you say… But silence eludes you it seems? Your initial questions (all be them rather blind and one sided from the get go) do nothing but obviously aggravate, not stimulate, reasonable reply from most others reading this. You say you are certain Prof Jelinek “would not consider any of my comments as offensive (or even controversial).” Hmm, bold statement to be making based on his extensive research into his recent findings -- it humors me that you think he possibly hasn’t considered in his many years of research, the five minute questions you have come up with?
Keep up the good work -- if it wasn’t for people like you we wouldn’t have such strong research findings… Jesus.
Evidently its best to leave the doubting Duncans of this world to themselves..
He just doesn’t “get it”.
When one has MS, you do whatever it takes to heal yourself.
You become open minded to explore what one can do for themselves.
Many of us MSers know now that the drug treatment of the past were never any cure and gave us nasty side effects and of course did nothing to stop MS progression.
When you have MS, you become passionately and proactively attentive to what can really heal you (that’s if youhave the mindset that you will do what it takes).
Duncan is like my neurologist.
My neuro just shakes his head each and every time saying no that won’t work, when I’ve told him of the dietary and lifestyle regime adopted for stopping MS progression.
I no longer bother trying to get my neuro to understand.
Like I said, when one is closed minded, best leave them in their corner.
As a MS patient, I only wish that type didn’t work in the medical field.
As I have already stated, asking questions of the methodology and possible limitations to it has nothing to do with whether the outcome of the study is correct or not.
In summary
-- all of the points I raised are valid
-- several of them are raised as limitations by the researchers themselves
-- I have provided an evidence base for my assertions which are backed up with already-existing research
-- your interpretation of my points as inflammatory (I address this to most of the commenters above) is not based on any of the content of them (as described above -- they are not in fact in any way controversial, and the language used was neutral) but in fact just a poor understanding of standard research commentary and wishful thinking that whatever the limitations of this study the answer must be true and any questioning should be aggressively witchhunted.
The fact that several of the commenters have justified their hysteria by pointing out that
-- they have had bad experiences with their neurologist
-- Prof Jelinek has personal and family interest
-- some other rambling unrelated nonsense
only supports my position. What do any of these have to do with whether or not their are limitations to the study?
To all of you who have (or have a loved one with) MS -- you have my every sympathy. But having a disease and wanting there to be a cure and any number of personal anecdotes do not add any weight at all to whether or not there are limitations.
So to reiterate my original questions:
1. How did this group stay so compliant when lifestyle modification is generally not adhered to?
2. Or was this group not compliant and this was entirely the result of a 5 day live in retreat (seems unlikely)
I have already backed these up with several examples of research which show that lifestyle modification often has low rates of compliance. An appropriate retort would be:
-- agreement
-- a link to a study showing that patients with MS have uncommon rates of lifestyle change behaviours
-- evidence from the original study that there was some documentation of high compliance levels or a difference in outcome from subgroups with high and low compliance
Saying that people with MS will do anything to change the outcome of the disease may or may not be true on a personal level. It has no bearing on the validity of this research.
3. Is ‘self reported diagnosis of MS by a neurologist’ a valid research diagnosis? MS is overdiagnosed by MRI alone — this could include a group of worried well who have seen a neurologist for potential MS with MRI findings alone
Again, I have linked to several studies which support my point of overdiagnosis if MRI is used without a supporting clinical context.
The number of patients enrolled in this study who had MS could feasibly be between 0% and 100%. I expect the number is on the higher end but I do not think that conclusions can be made on the outcomes of different treatments for a disease when there is no evidence to say that the study population even had the disease.
Appropriate retorts would include
-- agreement
-- reanalysis of the data with confirmation of the disease by neurologist / GP
-- a reason to not question the data, e.g. the centre had collected data on this and found that the self-selected population had a negligible false-positive rate
4. Is a study performed by a practitioner who a) has the disease in question b) is a very vocal advocate of lifestyle modification and c) publishes a book about it and so has a pecuniary interest in the outcome of this research any less compromised than drug company sponsored research?
In retrospect, I should have change ‘pecuniary interest’ to ‘considerable emotional investment’. Either way, the concern is that one of the researchers is not objective. It certainly seems on the evidence I have from the above comments that people with MS are emotionally volatile and unable to make rational or even coherent arguments but I expect that’s not representative. It is well established that researchers can introduce inadvertent bias, hence the ideal research having blinded researchers.
Appropriate responses would include
-- agreement
-- evidence that the influence was minimised, e.g. that Prof Jelinek may have been involved in the research but in a position that did not allow for any influence on data collection or interpretation. A team of researchers could easily allow for this but I am unable to tell from the paper if this was the case or not.
5. Have these patients self-selected for being very involved in their own health care? They still had disease modifying agents and steroids. What was the social makeup? Are these people with means who can both afford a retreat and time off work? Do they therefore have private healthcare and prompt access to a neurologist?
Again, I have provided plenty of evidence to support this statement. It is highly likely that the attendees are of relatively higher income (can afford to attend, travel, miss work) and this is known to lead to better health outcomes.
Appropriate responses would include
-- agreement
-- a breakdown of the group analysed by income/social class and comparison with matched controls if not of a similar demographic from the comparison group
I am still amazed by the sheer unbridled wittering that’s been offered in response to my original questions. It is almost all entirely irrelevant to the original point. Once again, I would stress that I have no vested interest one way or another, my remarks were not intended to be (and quite clearly were not) inflammatory, and that they are in no way personally directed at the researchers or those with MS. Quite frankly, get over yourselves, and stop missing the point. I will not be replying to any more emotionally fraught pleading unless it in any way rationally addresses a point I have made, and so far there hasn’t been a single point made that even comes close to refuting any of the singularly reasonable comments I originally asked.
Hi again, Duncan
I’d resolved to stop posting, to allow you the last word -- like Hawkeye and BJ in M.A.S.H, but boy, have you just gone over the top. To reiterate, the study described by Mike in the initial post was a simple observational one.
As I understand it, the subjects entered by self-selection, presumably self-recorded their diagnosis, self-assessed their status using the best available questionnaire at entry and at an interval, and applied dietary and lifestyle advice as well as they could in the meantime. There is no role in the study, and, I would argue no value at all, for comparing the characteristics of the group with any other group whether in the general population, MS [or any other disease] population.
To that extent, your questions are irrelevant to this subject, although they are entirely valid [if not obligatory] in any discussion of a randomised controlled trial which by its nature sets out to compare groups. And so your penultimate sentence “quite frankly, get over yourselves, and stop missing the point” is a bit of advice you might consider. It might be even better if the moderator considers enforcing your last sentence.
I was perseverating a bit, wasn’t I?
Apologies for being a little ‘overenthusiastic’ (i.e. arrogant and pompous).
I had resolved to stop posting on this thread and let Duncan have the last word, rather like BJ and Hawkeye on M.A.S.H. I was amazed at the hubris and repetitive irrelevance of Duncan’s last post -- I can’t believe that the thread has been terminated in such a fashion, and I’ve waited in vain for any sign of a retort.
It’s very kind of you, Duncan, to lay out in detail your objections -- I’m not sure whether they are aimed at the study in question, or at Mike Cadogan’s initial review of it, or to the publication of any anecdotal accounts or unselected cohort studies in medicine that might ever be of interest. I think all the readers would consider that once, or at most twice, would have been enough. It’s even kinder for you to spell out in detail the terms of any further replies that would qualify for the magnificence of your attention.
I’d just refer you to your penultimate sentence above -- “stop missing the point”. If you could just enlighten us about how further analysis on the diagnostic status, wealth, demographics, access to care, and motivation of the subjects or the authors could allow useful comparison with any other group under the sun, then you would surely earn our gratitude -- you would have laid out an entirely new research tool. At the risk of being a bore, I repeat -- the questions you raised on your first post are valid and occur naturally to all RCTs. They were valid the first time, man, but they just don’t apply here. They are unanswered because (a) they don’t apply and (b) the study wasn’t designed or carried out to answer them -- it makes no pretence of being more than it is.
Perhaps the blogsite moderator might take to heart, and enforce, some of the terminal sentence of your last rant -- personally, I found it cringeworthy in its arrogance.
The world prefers the messiah over the scientist it seems…
My view is that Jelinek’s work is the start of the research road, not the final destination
Not the be all and end all, but an intriguing hypothesis with proof of sorts that warrants more attention
There is no crime in asking questions and indeed it is indeed necessary to build understanding
I am sure that as a non-MS sufferer I too would benefit intensely from many of the healthy living recommendations put forward, as would MS sufferers
If and the golden if… compliance were not an issue
Yes this research is intriguing, lets go further into it
Scientific method has its place
By way of explanation, my post of 06 March was made when the previous one of 02 March hadn’t appeared -- I assumed that I had “timed out” or failed to hit the “Post Comment” button, or even that the moderator had terminated the thread.
Observer makes an astute observation -- reports such as these serve as a seed for just about all RCTs. As a longitudinal cohort study, its design can’t really be changed, and the subjects are entered. They can’t even be compared with another “generation” of retreat attendees, because subtle, or even major, changes will occur in the discussion subjects, over time.
I wouldn’t regard Jelinek as a messiah in any way. He’s neither a neurologist nor an epidemiologist and all he’s done is attempt to pass on, in a fashion that suits both sufferers and physicians, an objective account of what’s “out there” on the subject. I think his motivation is that it’s the right thing to do, and he’d feel like s..t if he didn’t.