Suggestions for the NMSS

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby OddDuck » Sat Jan 22, 2005 5:34 pm

:D :wink:

Now THAT'S the Wesley I know and love! Sounds like things are really coming together for you overall, too! That's terrific!

Ok............I'll find out for certain who the best person or contact might be for you to start out with. It may, of course, take me a couple of days (during the workweek next week) before I can let you know.

And they know it's a work in progress. Almost everything in MS research is right now.

I'll let you know, though.


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Postby OddDuck » Sun Jan 23, 2005 6:18 am

Well, it has been a few days now, and this thread has had over 300 hits, but still nobody has suggestions or comments to make DIRECTLY to the NMSS? Especially when they have been so gracious as to put themselves on the firing line?

I don't want to sound sarcastic, but here is everyone's chance to have their voices heard, which is what I have been hearing for months that everyone wanted! Now we have it. Our chance to "be heard" directly by the Research Department at the headquarters of one of the largest MS research funding organizations that we have. And nobody has a thing to say now?

Ok then. Just remember, though, that if anybody has any other comments regarding the NMSS or suggestions for the NMSS, but won't pose them directly TO the NMSS, those same people have no right whatsoever to "complain" later about where our research dollars are going, etc. None. The only way to affect change is to ACT to affect change and MEAN it! I acted in order to get them to agree to do this for us, and this is all we can do?

I must say I'm disappointed in this. There goes our credibility, folks. As a group, that is. As for me? They (the NMSS) know me............I continue to fight for and on behalf of MSers everywhere, and will continue. And if that is doubted by any of you, then just ask them. I'm sure they will have no problem telling you that sometimes they wish they had never heard of me.

But you know what? That's what they are there for. MSers!

I guess I rest my case. How can anyone complain that the NMSS isn't doing their best for us, or "representing" us the best they can, when they aren't getting any feedback telling them that they are not!?

:( :?

Thanks to those who have participated. Of course, I'll leave this thread here, but I can't guarantee for how much longer this particular dedication to us on thisisms specifically as a group (you can call it something of a panel, with few attendees) will continue. How often DO you see the NMSS offer to answer questions for a message board?

Of course, the NMSS is always there for us (good or bad), and frankly, you can't say they didn't just prove it.

Thanks, again.

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Postby Shayk » Sun Jan 23, 2005 7:05 am

Hi Deb

I really appreciate your opening this channel of communication as well.

I am still working full time and thus have been unable to craft a response before this week end. I am doing the best I can this week end to prepare some recommendations for the NMSS.

So, this is a plea to keep this line of communication "open" through this evening. And, actually one of my recommendations is that the NMSS partner with people with MS, their family members, caregivers and significant others in their work.

Thank you.

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Postby OddDuck » Sun Jan 23, 2005 7:35 am

Hi, Sharon!!!

That's terrific!!! And hey! That IS a great idea!!! I can see several options for the NMSS to sort of run with that and/or expand on it.

Ok..........I have to find out some specific information for Wesley anyway, so I'll pass along your stuff, too, when you get it together!

Thanks, Sharon! I wondered where you were! :wink: Especially with all your knowledge and research regarding hormone involvement in MS, etc.

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Postby Shayk » Sun Jan 23, 2005 7:55 am

Deb since I want to get my non-scientific, lay person 2 cents in before it’s too late, here’s the first response. I’ve tried to include some rationale for each recommendation.

I’d like to recommend that:

The NMSS continue to focus on targeted gender research projects. They did after all note the progress it produced.

Because I think it could be important in MS research I also want to try and make a distinction between gender and sex hormone research. The recent article that “Sex Hormones Modulate Brain Injury in MS” is an example of both gender and sex hormone research. In that study testosterone levels varied among women with MS and were associated with MRI outcomes, but testosterone levels in men did not vary and were not associated with MRI outcomes. So, even though the study focused on sex hormones, it also resulted in gender specific information about MS. Suffice it to say that the first line of a 2001 abstract of an article entitled HRT and its effect on normal ageing of the brain and dementia states: There are significant gender differences in human brain disease.

The NMSS focus on hormone research (estriol, estradiol, progesterone, testosterone, DHEA and cortisol) in their targeted neuroprotection and myelin repair project.

I recently posted some information about progesterone on the estriol thread so perhaps you could share that with the NMSS. It would appear from the NMSS site that they are aware of the upcoming study in Europe using progestin. It’s my understanding that progestin is not the equivalent of bioidentical progesterone. I’ve learned that fertility specialists in the US apparently only use progesterone and not synthetic “progestins”, so I think utilizing bioidentical hormones will be important in MS research as well.

In addition to the individuals with expertise in research on sex hormones and MS, the NMSS could invite experts in bioidentical hormones and balancing, blood and saliva hormone testing, as well as neuroendocrinologists and others to participate in their targeted neuroprotection and myelin repair project.

A presentation at a recent Endocrinology Conference recommended that hormone screening and assessments be routinely conducted in people with severe brain injury because of the importance of sex hormones on the outcome. In view of the recent article on sex hormones in people with MS perhaps it is time to consider routine and regular hormone assessments in people with MS of all ages.

I believe individuals with expertise in bioidentical hormones could make important contributions to the targeted neuroprotection and myelin repair project via the development of information and guidelines for use by MS clinics, etc. to implement such a protocol to improve the care and treatment of people with MS now.

As for the neuroprotective effects of estrogen (in these cases 17 beta-estradiol), there are two studies I haven’t posted yet that may be relevant. Estrogen attenuates oxidative stress-induced apoptosis in C6 glial cells concludes: These results indicate a role for estrogen in preventing apoptosis in C6 glial cells exposed to hydrogen peroxide. Our results suggest that estrogen have a protective role in minimizing glial cell apoptosis in neurological diseases such as demyelinating disease or central nervous system trauma.

The second study is entitled T lymphocytes do not directly mediate the protective effect of estrogen on EAE concludes: These results provide the first demonstration that the protective effect of E2 (17beta-estradiol) is not mediated directly through E2-responsive T cells and raise the alternative possibility that nonlymphocytic cells such as macrophages, dendriditic cells, or other nonlymphatic cells are primarily responsive to E2 treatment in EAE.

The NMSS investigate the question: Are high levels of the stress hormone cortisol in people with MS a major factor in the MS disease process and/or the disease process itself?

My lay person’s rationale for recommending this will be the focus of my second post.

Thanks Deb

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Postby BioDocFL » Sun Jan 23, 2005 8:02 am

Something I have mentioned previously is that funding organizations need to hold the funded researchers accountable. I would like to feel that the NMSS follows up on their funded projects and the expected results, such as publications and training of new personnel interested and knowledgeable on MS.

I have seen funding (by other organizations) go to 'researchers' who have a long history of no productivity on their projects. These 'researchers' stay in business because they know how to play politics, but, as far as their own labs, nothing productive ever comes out and the graduate students and/or post-docs get nothing but grief for the time spent.

I won't mention specific labs but a 'researcher' can play politics and survive without being productive. How? Get on review committees or have an affair with a collaborator or be an editor for a journal. 'If you put my name as second author on some of your other papers, I will approve your current paper for publication.'
Then the 'researcher' has a long list of publications, looks productive. But, few if any of their publications are from work in their own labs. The students and post-docs who made the mistake of going to that lab are not getting the training or publications they need. Most leave without fulfilling their proposed time in the lab out of frustration.

In one such case I saw recently where the 'researcher' got a very big grant from a national organization (not NMSS). I did a search on the 'researcher' and saw nothing from their own lab (none of their post-docs were authors). The 'researcher' had only second authored articles or first author review articles.

So what I am saying is that, if a researcher is applying for funding, the funding organization needs to check that the lab is productive on its own right. Any junior personnel involved in the project should have a good chance at becoming productive in the scope of the project and that it will be a positive environment for their development into future MS researchers. Followup on publications from the project and career choices of the junior personnel afterwards is important to prevent ongoing funding of worthless labs and perpetuating waste.
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Postby bromley » Sun Jan 23, 2005 10:09 am


I feel a bit cheeky adding to this as I'm from the UK (and a non-scientist), but here's some thoughts:

- There should be much more international collaboration in MS research. Perhaps the NMSS could start funding international collaborative projects. One get's the impression that there are lots of researchers out there doing their thing (and coming together a couple of times a year) but (one gets the impression) there's also a lot of duplication.

- Researchers given substantial sums of money should be required to come up with a real advancement in the knowledge of ms. Too many research papers come up with the same old phrase - 'more research is required'. (It can sound like a job creation scheme).

- More research in collaboration with researchers of other degenerative diseases eg Parkinsons, Alzeimers etc. I suspect that some of these diseases have more in common than previously thought and possible treatments might cover one or more.

- Much more research on neuro-protection. When one looks back over recent ms research this has been a goal, but little has been achieved to date.

- Too much research has relied on EAE and there are some big questions as to how applicable this is to ms. It would be good to fund another model which might be closer to ms than is the case with EAE.

- I would also like to see a research project which answers the question (once and for all) - is ms an auto-immune disease? Too many research papers start from the premise that ms is an auto-immune disease. Until we can answer this question and understand the role of the immune system we're going round in circles.

As I said, I'm a non-scientist so rely on you to put forward those you think are reasonable and translate them into scientific language.

Hope this is useful.

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Postby BioDocFL » Sun Jan 23, 2005 12:17 pm

Bromley, great post!

I agree that there are parallels in many supposedly unrelated diseases that need to be researched.

For example, I read recently where stabilization of Z-DNA (a left-hand coiling of the two DNA strands as opposed to the usual right-hand coil of B-DNA) has been observed in Alzheimer's and was proposed as possibly having some causative role. In lupus one of the first appearances in a bout is often anti-DNA autoantibodies but the DNA is apparently not foreign DNA. Autoantibodies against DNA appear occassionally in normal people. The main difference in normal vs lupus patient anti-DNA autoantibodies is that the lupus patients' autoantibodies are enriched for anti-Z-DNA sequences, and the autoantibodies bind better when the DNA is stabilized in Z-DNA conformations. Z-DNA can impact transcription rates and chromatin packaging.

And I have been harping on possible similarities between MS and lupus. I also see parallels with some cancers.

It bothers me how little MS, lupus, RA, and other disease patients and researchers compare notes. Check out a lupus forum ( sometime and see if they aren't talking about many of the same things as MSers: CNS problems, MRIs, lack of clear diagnosis, burning leg pains, etc.

You mentioned collaborations between researchers in different countries. I saw an ad in the latest Science about the Human Frontier Science Program run out of Strasbourg, France. It is sollicting proposals for grants where there are cross-national collaborations. At least one researcher needs to be from: Australia, Canada, the European Union (including 10 new members), Japan, Korea, Switzerland, the UK or the USA. It is to bring together biologists, chemists, physicists, engineers, mathematicians, and computer scientists on projects related to complex mechanisms of living organisms. Deadline for letters of intent is March 31. Support is for 3 years.

This is a really good concept. Perhaps the NMSS would like to foster a similar program. The NMSS should at least facilitate networking between researchers. My feeling from considering attending MS meetings, some with NMSS sponsorship, this past year (I might have gotten the wrong impression I'll admit) was that the meetings were primarily for a tight core of MS researchers and that they were going to limit the time and interest in new ideas and researchers. It did not seem very appealing to me to attend or that I would hear equal time given to such topics as the Barnett & Prineas findings on MS lesions preceding an immune reaction.
Again, I probably got the wrong impression but that's how I felt.

When I have published ideas about autoimmunity, I get many requests from foreign researchers for copies of the articles. If they were interested in some kind of collaborative project, it would be nice if I had some specific ideas on possible funding I could mention to them. Of course it would take a lot of discussion with them to see what ideas and projects we might agree on but, without a foreseeable means of funding, that limits the effort we should expend in trying to find something collaborative to do. I would think that in some foreign countries the NMSS might get more bang for the buck with regards to salary expenses. But I don't know what the restrictions are on NMSS fund distribution. Certainly don't want to short-change US researchers who are earnestly working on MS.

And then you mentioned neuro-protection. I would like to see a project, perhaps leading to clinical trials, of difluoromethylornithine (DFMO). This shows some promise in cancer-prevention and is in clinical trials for that. It has had some problems with dermal and intestinal lesions. But, DFMO can suppress lupus development in mouse models that normally spontaneously develop lupus. My feeling is that it (or something similar) might have some neuroprotective benefit for MS. No proof or studies that I know of or can cite, but it seems to me it could be a possibility.

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What will it take to get some attention paid to LDN?

Postby JoyceF » Sun Jan 23, 2005 3:27 pm

Hi Deb,
I also think this is a great thing to be able to finally get some answers. My question is just simply what it will take to get some of that money put aside for some clinical studies of LDN. It looks like a researcher would have to put together a package stating what they would do? Can they be more precise about what would be needed. Perhaps if all of us knew exactly what it would take, we could start working on accomplishing that.
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Postby Shayk » Sun Jan 23, 2005 4:59 pm

Bromley, a very good post and I quite agree with you on the need to increase international collaboration in MS research and many of the other issues you raised as well. A world summit on MS may be just what’s needed to kick it off.

Wesley, I can’t really comment on your ideas, they’re far too scientific for me to understand, but I do appreciate your interest in MS research and certainly support that.

Joyce, I hope they answer your question as well. Perhaps the NMSS could issue a request for research proposals on LDN, one of those $50,000 new investigator grants or something just to get things started in the US.

Now, on to another recommendation for the NMSS research department.

I would like to recommend that the NMSS investigate the question: Are high levels of the stress hormone in cortisol in people with MS a major factor in the MS disease process and/or the disease process itself?

I’ve tried to summarize my rationale for this recommendation because this is a really long post.

Summary (of sorts :))

MS is a disease with an unknown cause and an unknown cure. It seems to me that undetected and undiagnosed persistently high levels of the stress hormone cortisol (AKA hypercortisolemia and/or HPA hyperactivity) in the CNS of people with MS could be a major factor in the brain and spinal cord atrophy found in people with MS that results in the progression of disability. Gender differences may be involved in this too.

I think this may be a possibility since Cushing’s Syndrome, one of a few diseases known to be associated with high cortisol levels, appears to result in significant brain atrophy. Thus, if high cortisol levels are known to produce brain atrophy in people with Cushing’s Syndrome, it seems reasonable to ask if high cortisol levels in people with MS contribute to the brain and spinal cord atrophy and subsequent disability we experience.

Now, on to some back up information. I’ve organized it by topic areas,

The MS Disease Process and Brain Atrophy in MS,
Spinal Cord Atrophy in People with MS,
High Cortisol (Stress Hormone) Levels in People with MS,
Links to Brain Atrophy in Cushing’s Syndrome, and lastly,
Gender Differences in Stress (Cortisol) Related Factors

finally noting that both progesterone and desipramine may help reduce high levels of cortisol but that the most important reason to study stress (and the stress hormone cortisol) is because many people with MS associate stress with MS symptoms.

The MS Disease Process and Brain Atrophy in MS

Some highly regarded MS researchers question the auto immune theory of MS and others see a neurodegenerative disease process.

Patricia K. Coyle, M.D., Professor of Neurology, School of Medicine, SUNY at Stony Brook, NY notes the following in an e-article from Medscape, entitled Perfect Pitch: Fine-tuning the Management of Multiple Sclerosis. I have added the emphasis to these quotes from that article.

MS is now believed to involve a biphasic disease process. Early on, inflammation is prominent, corresponding to the relapsing and potentially reversible phase of MS. Later, there is transition to a primarily neurodegenerative phase, corresponding to progressive MS with irreversible deficits. Although inflammation and neurodegeneration are detected at all time points, 1 process appears to dominate. This concept is consistent with natural history studies of MS, since most patients begin with relapsing disease but ultimately transition to secondary progressive disease. The presence of distinct MS phases argues for therapy that is tailored to the nature of the disease process.

The classic view of MS is that it is a disease that involves CNS inflammation and demyelination. It is now clear from direct pathologic data and indirect neuroimaging data that it also involves damage to axons and neurons.

Both axon density and volume are reduced in MS, not just within the plaque but also in normal-appearing CNS tissue…. Loss or shrinkage of axons is a major contributor to brain and spinal cord volume loss (atrophy). In patients with MS, prominent CNS atrophy is present very early, even at the time of the first clinical attack. On a yearly basis, brain volume loss in MS is accelerated 3- to 10-fold over that of matched controls.

The importance of axon damage in MS cannot be overstated; it is believed to be the neuroanatomic substrate of permanent disability and disease progression. Injury to axons undoubtedly reflects multiple factors. At least some of the immune and inflammatory elements that injure axons are distinct from those that damage myelin. Axons or axon components (such as ion channels and neurofilaments) could be the target of a direct primary or secondary immune attack.’’

To reinforce Dr. Coyle’s perspective, an abstract entitled Measures of brain and spinal cord atrophy in multiple sclerosis states that the measurement of atrophy probably represents axonal loss. “Several recent studies have shown that atrophy is a process closely linked with the progressive phase of multiple sclerosis and worsening disability. Furthermore it has also been shown that atrophy may evolve despite the absence of inflammatory activity as judged by gadolinium enhanced MRI and thus its measurement gives information in addition to that obtained from conventional MRI.”

Spinal Cord Atrophy in People with MS

A very recent MS research abstract, Pathological study of spinal cord atrophy in multiple sclerosis suggests limited role of local lesions, notes in part:

“The multiple sclerosis cords were found to be significantly smaller than the controls. The duration of the disease played the most important role in determining spinal cord atrophy. The degree of atrophy varied in different parts of the cord. Individual lesions played a minor role in local atrophy. Our findings suggest that axonal degeneration, possibly caused by the cumulative number of lesions in the brain or cord, or an alternative atrophic process, is responsible for spinal cord atrophy in multiple sclerosis, rather than tissue loss within individual lesions.” (2005)

High Cortisol (Stress Hormone) Levels (aka hypercortisolemia and/or HPA hyperactivity) in People with MS

While people with MS have long associated stress with relapses and worsening symptoms, the bulk of that research in the U.S. has primarily focused on connecting psychosocial stressors of various kinds with MS relapses. An examination of how the stress hormone cortisol may impact people with MS and the MS disease process itself seems to be very low profile in the US MS community.

However, there have been some studies, primarily at the Netherlands Institute for Brain Research in Amsterdam, funded by a Dutch foundation, “Friends MS Research” focused on high cortisol levels and the HPA axis in people with MS.

Some of the scientific research I’ve uncovered so far is arranged chronologically by date.

Adrenal size is increased in multiple sclerosis. concludes: “The increased adrenal size in patients with MS may allow excessive glucocorticoid secretion in response to stress and affect immune regulation.” (1994)

Dysregulation of the hypothalamo-pituitary-adrenal axis is related to the clinical course of MS, notes

“The degree of hyperactivity was moderate in relapsing-remitting MS patients, intermediate in secondary progressive MS patients, and marked in primary progressive MS patients. Differences were significant between the three patient groups, and between control subjects and each patient group. Indicators of HPA axis activation correlated with neurologic disability (EDSS), but not with the duration of the disease, number of previous relapses, previous corticosteroid treatments, or depressed mood.” This study concludes: “HPA axis hyperactivity in MS is related to the clinical type of disease, with a suggestion of increasing HPA axis dysregulation with disease progression.” (1999)

Dehydroepiandrosterone (DHEA) response to the adrenocorticotropin test and the combined dexamethasone and corticotropin-releasing hormone test in patients with multiple sclerosis. concludes: “As with the HPA axis system, our results suggest a dysfunction in the DHEA secretion in patients with MS.” (1999)

Hypothalamic lesions in multiple sclerosis concludes: “We conclude that systematic pathological investigation of the hypothalamus in MS patients reveals an unexpected high incidence of active lesions that may impact on hypothalamic functioning.” (2001)

Cognitive impairment correlates with hypothalamo-pituitary-adrenal axis dysregulation in multiple sclerosis
concludes: “Our results suggest an HPA hyperactivation related to increased cognitive impairment. Indicators of HPA axis activation further correlated substantially with neurologic disability, but only moderately with duration of disease and even less with depressive symptoms and fatigue. We conclude that the observed dysregulation is more likely a secondary effect of the extent of brain damage rather than primarily involved in the pathogenesis of MS.” (2002)

Cortisol is increased in postmortem cerebrospinal fluid of multiple slcerosis patients: relationship with cytokines and sepsis concludes: “We concluded that basal level of cortisol is significantly increased in the CSF of MS patients and that IL-6 is not responsible for this rise. The relationship between cortisol and IL-6 in sepsis is discussed.” (2002)

The hypthalamo-pituitary-adrenal axis in multiple sclerosis.
concludes: “Preliminary data show suppression of the activation of CRH neurons by active hypothalamic MS lesions. We propose that this suppression of CRH neurons by active hypothalamic MS lesions causes the concomitant unfavorable disease course via an inadequate cortisol response during relapses of MS.” (2003)

The Exacerbation of Hippocampal Excitotoxicity by Glucocorticoids is Not Mediated by Apoptosis concludes “Thus, GCs appear to augment excitotoxic death in hippocampal neurons without augmenting the occurrence of apoptosis.” (2003)

Impaired hypothalamus-pituitary-adrenal axis activity and more severe multiple sclerosis with hypothalamic lesions which concludes: “Thus, MS patients have a chronically activated CRH system, but, in the subgroup of patients with active MS lesions in the hypothalamus, this activation is impaired and the disease course is worse.” (2004)

Corticosteroid resistance in a subpopulation of multiple sclerosis patients as measured by ex vivo dexamethasone inhibition of LPS induced IL-6 production concludes: “We also found a trend towards worsening of clinical status over time with increasing corticosteroid resistance. These data suggest that coticosteroid sensitivity may be a factor in the pathogenesis and could be used for prognosis for MS.” (2004)

Links to Brain Atrophy in Cushing’s Syndrome here, begins "Decreased hippocampal volume is observed in patients with Cushing's syndrome and other conditions associated with elevated cortisol levels, stress, or both. and here.

Gender Differences in Stress (Cortisol) Related Factors

Contribution of Sex and Cellular Context in the Regulation of Brain Corticosteroid Receptors following Restraint Stress concludesThese findings provide further evidence for the existence of both regional and gender specificity in the regulation of brain and pituitary corticosteroid receptors following stress, and support the hypothesis of a distinct male and female neuroendocrine axis in response to stress.” 2000

Gonadal hormones affect neuronal vulnerability to excitotoxin-induced degeneration
concludes “These findings are relevant to possible modifications in neurodegenerative risk in humans as endogenous levels of gonadal hormones change during the menstrual cycle and during aging.” (1999)

Sex Differences and Opposite Effects of Stress on Dendritic Spine Density in the Male versus Female Hippocampus concludes: “In summary, males and females have different levels of dendritic spine density in the hippocampus under unstressed conditions, and their neuronal anatomy can respond in opposite directions to the same stressful event.” (2001)

Hopefully by now you have some idea of my rationale for asking the NMSS to investigate the question: Are high levels of the stress hormone cortisol in people with MS a major factor in the MS disease process and/or the disease process itself?

It has been demonstrated that people with MS have high cortisol levels and exhibit both brain and spinal cord atrophy that some researchers correlate with the MS disease progress and disability. In another disease, Cushing’s Syndrome, high levels of cortisol are known to result in brain atrophy.

A real “kicker” for me personally is that progesterone (you remember that potentially neuroprotective and myelin repairing hormone :wink: ) was recently shown in a very small study to reduce high levels of nocturnal cortisol in women.

And Deb, you might find it interesting that a study involving desipramine seems to suggest that it can possibly reverse glucocorticoid hypersecretion.

However, perhaps the most important reason for the NMSS to investigate this question is that many people with MS think stress is associated with their symptoms (myself included). The voices and experiences of people with MS need to be recognized and heard.

Having been diagnosed over a year ago now I personally find it astonishing that the MS research community may not have an answer to the cortisol question. This is not a comment about the NMSS. It’s a comment about the status of MS research and the need to listen to people with MS. We have been talking about stress for some time it seems to me.

Thanks again Deb and special thanks to This is MS members whose valuable experiences, knowledge, expertise, support and challenges have prompted me to recommend that NMSS investigate the question I’ve posed.

May we all experience less stress.

--sharon (with no progesterone and high cortisol :roll: )
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Postby OddDuck » Sun Jan 23, 2005 7:39 pm

Hi, guys!

Great comments and suggestions! Some I already know the answer to (as I have followed the initiatives of the NMSS closely for a while now), and some may turn out to be suggestions that they will need to pass on to researchers and/or can only keep in mind when they are reviewing new applications for funding from researchers. (I've done that myself. Asked them to keep an eye out for any applications that may deal with 'this or that' and if they come in, to please give them extra consideration.)

I watched closely, and truthfully, I could see where some of my suggestions had definitely been considered, because there were a few projects approved this last fall that were right on target with my suggestions. Was it me or simply coincidence? Based on the fact that it was a slightly new direction than what had been taken in the past and what had been past practice, I'd sincerely believe they took my (and probably others') suggestions.

But, as we saw before, I will leave it up to the NMSS to answer these themselves. Now THESE posts do pretty well cover most of what I believe we all have been wondering and/or would like to know that SOMEBODY there has definitely HEARD, at the very least! Having it always come just from me (to the NMSS), though, isn't always necessarily convincing that many others feel the same.

In any event, I believe they will definitely see that MSers may be hampered physically with this disease, but we certainly are not big dummies, are we? :wink: I'd say MSers are much more "involved" in the scientific side of this disease than perhaps many realize.

Thanks, folks!


P.S. Oh, yea, and Sharon! I've continued to update them regarding desipramine (per their request), and yes, we found that, also. :wink:

EDIT: Another thing, too, Sharon! I've always said for many years, that I swear my hormones are all messed up, too, in addition to whatever else is going on with me. But it all goes back to affecting me neurologically. (Uh, and some people may say I most definitely can be hard to handle at certain times! hehehe..........)
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Postby OddDuck » Sun Jan 23, 2005 8:30 pm

Oh, yea.........and this is pretty detailed stuff here, and covers quite a bit, so after this next response from the NMSS, I believe we may have to "cut them loose", as I put it. (That's why I was sort of pushing to get some questions and comments in to them while we had them with us.)

In all fairness, since the MS Walks are coming up, and the new changeover in hierarchy there, etc., our NMSS contact has a lot on his/her "plate" right now.

I think this is really good, though! It covers a lot, and I personally believe covers most of what we've all discussed and speculated on here for the past many months!

(Wesley, your comments regarding researchers "riding the funding trail", as I call it, is very similar to something I myself said to them last week, as a matter of fact. Except you said it better. I basically got a little "heated" about it. 8O :? :lol: Well, what can I say? That's "Deb" for ya!)

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Postby HappyDaddy » Mon Jan 24, 2005 2:45 am

OddDuck wrote: "We (NMSS) can really only fund small initial studies. Large scale clinical trials cost tens of millions which would eat up all of our resources and so we depend on companies to run with these and develop the drugs. Obviously we work with companies when they ask for help, suggestions etc, but it’s a two-way street and we are not always invited in."

Hi Deb,

Thank you for the quick feedback. Just some remarks.

There is no money in treating MS as an infectious disease while there is a lot of money in treating it as an autoimmune disease. So if you are waiting for pharma companies to launch clinical trials in antibiotics and possibly kill this profitable disease segment, I think you will have to wait a long time. They will even try to stop any trials going that way as our Minocycline/Copaxone trial has proven and which is apparant in the huge pressure these companies are putting on researchers to stay in line. Sadly these companies first priority is making profits and not curing people.

So if our MS societies will not become more proactive in directing certain trials which have limited profit potential, I’m afraid nobody will and it will be up to the MS patients themselves to try to get some cures working as is happening today. The limited profit potential might even be a good measure in deciding which trials should be sponsored by MS societies since it are these trials no company will invest in and clinical trials with already approved drugs can be done within a reasonable budget so are doable by the NMSS.

Best wishes,
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Postby SarahLonglands » Mon Jan 24, 2005 3:35 am

Hello Happy Daddy,

That's it in a nutshell: it seems that money is what counts, I'm afraid. As for the NMSS, like the British equivalent, I presume that there are many people working for it with a mild form of the disease themselves, they get to see it as a way of life, so finding ways of keeping the disease manageable is one thing, but getting rid of it completely is another. They are happy and fulfilled with it and expect everyone else to be as well.

I'm afraid that is cynicism in overdrive, not a normal characteristic of mine, so I'll go and get on with some work now.

Sarah :(
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Postby OddDuck » Mon Jan 24, 2005 5:10 am

Hi, HappyDaddy and Sarah!

HappyDaddy, I must admit that I did notice the same thing you did, and in my immediate email response back to the NMSS (thanking them for their response to us), I did mention the fact that the majority of MSers (and those affected by MS in any way) were not happy with pharmaceutical companies.

I'm glad you posted that. Very nicely said! What or whether the NMSS can do anything about that is yet to be seen, but I do think they need to know our opinions about it. I do know the NMSS has become highly involved in attempting to make changes in how clinical trials are done in the first place, but how or whether that will influence which drugs or pathogeneses of MS the pharmaceutical companies will investigate, or proceed with, etc., is (as you and Sarah note) in doubt.

I must say I do agree with you. Ways in which to influence the politics behind the pharma companies and their "methods" is indeed in need of change, and I must say that I agree that it would definitely help if the NMSS was also behind us on this situation.


P.S. You know, an organization such as the Boston Cure Project, who actually have pharmaceutical company people on their scientific advisory boards, should be able to help influence the direction that the pharma companies take when investigating MS!! Maybe Art Mellor can also jump in here and respond to that suggestion! ART?? (I will go send an email to Boston Cure and see if they are willing to respond to that, also.)
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