A new concept and treatment options for MS

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Re: A new concept and treatment options for MS

Postby Leonard » Thu Jun 15, 2017 7:10 am

jackblack400 wrote:
How long until we can get access to GNbAC1?

Edit: I've also been thinking about intravenous ATP supplementation. This has been proven to relieve fatigue in cancer patients. If ATP production failure is part of MS why can't that be solved by intravenous ATP supplementation?

Seen this? http://files.shareholder.com/downloads/ ... e_2017.pdf


Jack,

I don't know when GNbAC1 will become available. I picked up the link recently from a Dutch patient forum.

On the ATP supplementation, my physiotherapist suggested exactly the same. Apparently no need for intravenous administration. He used to take it when he was young and as a sportsman ran long distances. I am awaiting further advice.

Thanks for the link to the ATARA presentation. Looks well financed and managed.
Incidently, you see NasoPharyngeal Carcinoma (NPC) and Multiple Sclerosis (MS) mentioned in the same breadth. My grandfarther died from an NPC, I have MS. From my earlier postings, it is clear the two are related and how.
This article is also quite revealing: https://www.ncbi.nlm.nih.gov/books/NBK6235/
quote: EBV is considered a major cause of lymphomas. The putative involvement of the HERV protein in EBV-related growth stimulation of B cells raises the possibility that immunization against the HERV protein, or prevention of its expression via transduction of anti-sense constructs, might inhibit EBV lymphomagenesis. This would be a logical consequence of the results of Sutkowski et al194 There are many reasons to clarify this issue (see below). unquote
Cancer and MS: two sides to the same coin. Interesting, isn't it?

Reg,
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Re: A new concept and treatment options for MS

Postby Leonard » Thu Jun 15, 2017 7:14 am

The causes and very mechanisms underlying MS are set out in the Skeleton and synopsis under the links:
general-discussion-f1/topic15188-810.html#p248066
general-discussion-f1/topic15188-795.html#p245692
[and there may be some further useful ideas in here: http://www.mshackathon.nl/wp-content/up ... ressed.pdf ]

The ACTRIMS Feb 2017 Florida Forum covers exactly the same ingredients and would seem to confirm the thinking. See:
https://multiplesclerosisnewstoday.com/ ... o-florida/
The focus ... will be environmental factors, genetics, and epigenetics in MS susceptibility and clinical course. Presenters will disclose recent advances on the relationship between MS susceptibility and diet; the effects of sex chromosomes, hormones, and puberty on the risk of MS and the clinical course of the disease; reveal emerging data on the role of the microbiome in MS development; review controversies regarding the role of viruses in MS; convey state-of-the-art data on genetic and epigenetic factors as risk factors and disease modulators in MS; and other MS-related topics of interest. unquote
or
http://www.actrims.org/forum2017/index. ... -abstracts
http://www.actrims.org/forum2017/index. ... t-a-glance

The therapeutic options mentioned under the first link above flow directly from a basic understanding of the disease.

The work by GeNeuro and ATARA Bio are commercially driven but would again seem to confirm the above line of thinking. Companies try to find “access points” in the complex cascade, for medication to halt the disease and, to create new shareholder value:
https://www.geneuro.com/data/documents/ ... y-2017.pdf
http://files.shareholder.com/downloads/ ... e_2017.pdf
Or raise profit as here turning one mab into the other: http://www.wheelchairkamikaze.com/2017/ ... l?spref=fb

This is all fine by me, in the end that is how our system works. And for as long as shareholder value is aligned with patient value, there would be no problem. But they are not necessarily. Patients may be better served by the therapeutic options under the first link above, by taking early control of the disease over causal factors (anti-viral, even CCSVI liberation) or by taking control more vigorously and aggressively (chemo/HSCT) rather than control at a later stage by prolongued expensive medication with all its harmful side effects.

I think we have arrived at a point where a major conference should be called. From there, a new dynamic can grow to raise the game. I know it works like that because I have seen it happen several times before (albeit in a completely different area) and was even directly involved in the organization. It could be done again, by academics, policy makers, MS societies. I call on them to get going.
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Re: A new concept and treatment options for MS

Postby jackblack400 » Thu Jun 15, 2017 9:40 am

Leonard wrote:
Jack,

I don't know when GNbAC1 will become available. I picked up the link recently from a Dutch patient forum.

On the ATP supplementation, my physiotherapist suggested exactly the same. Apparently no need for intravenous administration. He used to take it when he was young and as a sportsman ran long distances. I am awaiting further advice.



ATP is destroyed in the gut - it is useless taken orally: https://www.ncbi.nlm.nih.gov/pubmed/22510240

This is why it has not gained more prominence as a supplement; people have been taking useless placebo pills. ATP must be supplemented intravenously or intramuscularly. If done so, it may be a game changer.

Thanks for the link to the ATARA presentation. Looks well financed and managed.
Incidently, you see NasoPharyngeal Carcinoma (NPC) and Multiple Sclerosis (MS) mentioned in the same breadth. My grandfarther died from an NPC, I have MS. From my earlier postings, it is clear the two are related and how.
This article is also quite revealing: https://www.ncbi.nlm.nih.gov/books/NBK6235/
quote: EBV is considered a major cause of lymphomas. The putative involvement of the HERV protein in EBV-related growth stimulation of B cells raises the possibility that immunization against the HERV protein, or prevention of its expression via transduction of anti-sense constructs, might inhibit EBV lymphomagenesis. This would be a logical consequence of the results of Sutkowski et al194 There are many reasons to clarify this issue (see below). unquote
Cancer and MS: two sides to the same coin. Interesting, isn't it?

Reg,


EBV has been linked to a whole host of nasties, including, you are right, cancer. But I'm not sure that means we can say MS and cancer are two sides to the same coin. I will read that evolutionary aspects of HERV and disease article, looks very interesting.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2039853/ has a bunch of references to IV ATP supplementation in late stage cancer patients.

https://www.ncbi.nlm.nih.gov/pubmed/10675381 is one:

Randomized clinical trial of adenosine 5'-triphosphate in patients with advanced non-small-cell lung cancer.

This randomized trial demonstrates that ATP has beneficial effects on weight, muscle strength, and QOL in patients with advanced NSCLC.
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The failure of the system

Postby Leonard » Wed Aug 09, 2017 12:31 am

https://globalfreedommovement.org/the-f ... er-review/

I quote from the Failure of Peer Review:
Most "experts" in medicine are, psychologically speaking, simply engaged in well-paid group thinking and confirmation bias exercises, vigorously affirming and defending their ego's construction of the world ...
Once the public has accepted the scientific establishment's truths, narratives, and designated "experts" then researchers whose research yields results deviating from the accepted norm can be immediately branded as crackpots, lunatics, fringe tools, pseudo-scientists and so on, ... unquote

We must think and should learn to think out of the box, look at other possibilities that leave the traditional medical establishment aside. Because they have constructed a scenario of what might happen (read demyelination and so on...). And the larger the group, the more difficult it is to disconnect oneself from the existing ideas and conclusions. In a sense, it works just like in religions, you automatically assume that all those people around you can not be all wrong.

But they can and they do. All the time.

My vision is here: general-discussion-f1/topic15188-825.html#p248331

MS is not primarily a demyelinating disease, but a failure of mitochondria to produce sufficient ATP for, on the one hand, the ion pump (neuro deficiency) and, on the other hand, the muscles (spasticity). Where at some point the mechanisms become convolved.

The real problem is not MS's etiology and pathogenesis, which are well known. The real problem is the systemic failure of medicine. The challenge is to make a change ...
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Re: A new concept and treatment options for MS

Postby frodo » Sun Aug 13, 2017 1:20 pm

Leonard wrote:The causes and very mechanisms underlying MS are set out in the Skeleton and synopsis under the links:

...



Hi Leonard. I have copied your post to the subforum of "etiology and pathology". I think that anyone looking for information about the causes of MS should read it. I hope you don't mind.

I have put it here: ms-etiology-and-pathogenesis-f59/topic29314.html

If you do not like it just tell me and I will remove it.

Thanks for your posts.
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Re: A new concept and treatment options for MS

Postby Leonard » Wed Aug 16, 2017 4:15 am

Hi frodo: you'r welcome to use it as you wish and as you see fit...

@everyone reading here: please spread the message as wide and as far as you possibly can.
Use other fora such as Facebook patient groups to get the message across.
And if you have any contacts there, send it to the press as we will need an actively engaged and critical press to open the discussion.
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Re: A new concept and treatment options for MS

Postby Leonard » Thu Oct 05, 2017 2:59 am

As we have seen in the skeleton and the synopsis general-discussion-f1/topic15188-825.html#p248331 , the gut micro biome is a key factor in the etiology of MS. This article in Nature would seem to confirm the thinking and argues that multiple sclerosis patients have a distinct gut microbiota compared to healthy controls:
https://www.nature.com/articles/srep28484
In fact, it is even believed that MS onset could in certain cases be triggered by the micro biome:
https://www.sciencealert.com/multiple-s ... t-microbes

For myself, I was diagnosed with an Inflammatory/Irritatable Bowel Syndrome (IBS) in 2002, followed in 2004 by the MS diagnosis.
But I am not sure whether the micro biome was the issue or perhaps an IgA depletion due to poor working of PPs (EBV B cell related) was lying at the root of my problems.

In any event, Thomas Borody has demonstrated the efficacy for MS of a gut flora transplantation, with PwMS recovering or improving after a gut flora transplantation.

I think that diet alone will not be enough. Some patients who used the Wahls diet to the extreme did not manage to reverse the disease with diet alone. Terry Wahls herself used several cycles of Mitoxantrone prior to her recovery.

This article and other articles suggest that the micro biota regulates T cell functions. While there may be a direct link between the micro biota and the immune system, it cannot be excluded that the reaction is indirect where a healthier micro biota strengthens epigenetic regulation of the cells, reduces cellular expression and by that calms down the immune system.
http://www.pnas.org/content/114/40/10713.full

Whatever is the case, there may be a faster and more effective way than through the microbiome to dampen autoimmunity by interacting directly with T/B cells as with Cladribine. The next posting expands on that idea.
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Re: A new concept and treatment options for MS

Postby Leonard » Thu Oct 05, 2017 3:06 am

jackblack400 wrote:Alemtuzumab destroys T cells as well, which is important because B cells aren't the whole story. Ocrelizumab has already been proven to be far inferior to Alemtuzumab and (obviously) HSCT.

Cladribine is like Lemtrada but can cross the blood-brain barrier, it's actually pretty unfortunate that it was pulled from the market for MS. It's something that's going to have to be explored further.

...


Jack, thanks for your postings. Clearly, you are well informed. I am afraid that I did not sufficiently appreciate the comments you made earlier.

As regards your above posting, I would wish to position for a moment Cladribine in between the mabs (e.g. Lemtrada) and HSCT (chemo + stem cell transplantation). Or, in other words, in between on the one hand a light and poorly understood T/B cell depletion regime (mabs don’t enter the CNS so how do they work? ms-etiology-and-pathogenesis-f59/topic29004.html this is why some private neuro clinics administer Rituximab which are rather big particles intrathecal ) and on the other hand a heavy T/B cell depletion regime (HSCT).

Cladribine has recently been approved for highly active RRMS by the EMA
https://www.multivu.com/players/uk/8162 ... ladribine/
http://www.ms-uk.org/european-commissio ... cladribine
https://en.wikipedia.org/wiki/Cladribine
https://www.ncbi.nlm.nih.gov/pubmed/28626781
But besides RRMS, Cladribine is believed to be effective for progressive MS too, and a treatment solution for all.
https://www.ncbi.nlm.nih.gov/pubmed/8643695
http://multiple-sclerosis-research.blog ... o-let.html

The story of Cladribine is fascinating, in more than one respect. Its efficacy for MS was found already back in 1996, but it disappeared from the radar until quite recently.
http://multiple-sclerosis-research.blog ... lls-b.html
Where I don't exclude the possibility that Cladribine for MS is thriving now to give neurologists a 'competitive' alternative for chemo/HSCT which domain is controlled by hematologists.

@ all: I encourage you to read the Barts MS blog under the last link whow….
And to discuss it with your neurologist. That is what I will do.
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Neuro degeneration

Postby Leonard » Mon Oct 23, 2017 1:21 am

Just recently, I came across this article on another thread on this forum: Mechanisms of Oxidative Damage in Multiple Sclerosis and Neurodegenerative Diseases
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3472775/
[found on general-discussion-f1/topic29496.html#p250120 ]

Now I don’t think the detail is very important but the broad line is all the more important. The thinking fully aligns with the thinking on this thread above.
Interestingly, besides MS, the mechanism of oxidative damage may also underlie many other neurodegenerative diseases such as Alzheimer’s disease.

I think Alzheimer's then works a bit like this:

Specific brain cells don’t trigger internal interferon mechanisms when herpes virinae enter the cell. This deficiency is SNP related; SNPs having a key role in (double stranded) viral DNA detection and anti-viral signalling. The virus can anchor itself in these 'permissible' cells. As there is viral tolerance (you may find ref’s above in this thread), the immune system does not react. People stay healthy but are predisposed.
https://www.researchgate.net/publicatio ... otein_MAVS

In parallel, over time, T/B immune cells get infected with herpes virinae, e.g. T cells with simplex and VZV, B cells by EBV. But even then, people remain healthy but are even more predisposed now.

The problem starts when epigenetic regulation is lost (this is gut microbiome related) and brain cells come to expression. At that point, immune cells find common epitopes causing a cross-reaction. This leads to superoxide (to kill the pathogen), and the initiation of all sort of mechanisms we have seen in the postings above, some of which are also mentioned in the first article.

This causes oxidative stress on the brain cells, cells die one by one. And one get holes in his brains and is diagnosed with Alzheimer’s Disease (AD).

Besides neurodegenerative diseases, also other autoimmune diseases like Rheumatoid Arthritis (RA) may find their origin in similar mechanisms:
Oxidative Stress Relevance in the Pathogenesis of the Rheumatoid Arthritis: A Systematic Review
https://www.hindawi.com/journals/bmri/2016/6097417/

Of course, MS is different from AD or RA. A skeleton of MS is given here: general-discussion-f1/topic15188-810.html#p248066
But the fundamentals of all these diseases would seem similar: oxidative stress and damage.

A better understanding of disease patterns may also lead us to new therapies for MS and - if the above concept is confirmed - for Alzheimer's and other neurodegenerative and autoimmune diseases. This would include therapies from light (low efficacy) DMTs as interferon and mabs to (high efficacy) more aggressive chemo therapeutic agents (broad T/B cell depletion such as cyclophosphamide and specific B cell depletion such as Cladribine), from microbiota manipulation through diet and probiotics to gut flora transplantation and compounds for more direct control on methylation/epigenetics, from light anti-viral acyclovir based therapies to Highly Active Anti-Retroviral Therapy (HAART) which also seems to work for double stranded herpes.

---

But a total breakthrough requires more than new ideas and concepts, more than lifting old barriers and obstacles.

When building a new model in this area, we can’t just follow a “waterfall” approach. When innovation depends on a series of interdependent innovations – i.e. when innovation is systemic – independent (medical) disciplines will usually not be able to coordinate themselves and to knit those innovations together. In monoliths then like ECTRIMS, innovative ideas will always be squashed, their planning sucks, they keep the sector in a stranglehold. [Post script: to note how far the ECTRIMS/ACTRIMS agenda Oct 2017 Paris is removed from the thinking here. Also to note how the innovative thinking of the ACTRIMS Feb 2017 Florida Forum seems to have entirely evaporated in the Paris meeting]

Scale, integration and new leadership are required to establish and advance new standards.

It is my hope that this thread will provoke new thinking in the sector and stimulate doctors and researchers to enter entirely new pathways.
I am going to draw a line here, it is now for others to pursue.
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Re: A new concept and treatment options for MS

Postby vesta » Sun Oct 29, 2017 5:57 am

Greetings:

After noting Professor Dr. George Eberts MS research in 2014, I observed that the birth control pill could be the cause of a statistically significant increase in MS incidence in women over the past 50 plus years. Mike Gaskins calls that idea the « elephant in the room ». (See below).

Birth Control Pills increase the risk of stroke and migraines as well, all vascular issues which point CCSVI as a factor in MS. So how does the vascular factor fit into your bio-chemical narrative ?

http://www.hormonesmatter.com/multiple- ... is-birth...

Author : Mike Gaskins, Jan 9, 2017
Multiple Sclerosis’ Growing Gender Gap

You may wonder how all this talk of T cells and endocrine disruptors translates to actual women. Unfortunately, the results are just as you would suspect. Kaiser Permanente released a study in 2014 disclosing that women who had taken The Pill were 35% more likely to develop Multiple Sclerosis than women who hadn’t. The study also found that women who had used contraceptives but had stopped at least one month before symptoms started were 50 percent more likely to develop MS.
Multiple Sclerosis has always been a discriminatory disease for the reasons outlined by Dr. Rose earlier in this article. However, all indicators point to a dramatic widening of the gender gap since the introduction of birth control pills. According to Gary Cutter PhD., professor of biostatistics at the University of Alabama, in 1940, twice as many women as men had Multiple Sclerosis. By 2000, four out of five MS patients were women. That’s a 50% increase over each decade!
A report published in the Neurology Journal confirmed the increased gender gap as a global trend. After reviewing worldwide epidemiological data, the researchers found that the female-to-male ratio was approximately 1.4 in 1955, and had jumped to 2.3 by the year 2000. Sreeram Ramagopalan, PhD, research fellow at University of Oxford, offered this commentary on the study:
“This intriguing epidemiological phenomenon warrants particular attention because the sex ratio of MS parallels MS incidence, and the increasing frequency of MS among females is a key driver of the increasing prevalence of this devastating disorder worldwide. A change that occurs within a century is too short a time for a genetic cause. This suggests that environmental factor(s) are at work in a sex-specific manner.”
Pardon me for pointing to the elephant in the room, but evidence has already mounted against one particular sex-specific environmental factor that’s been influencing the rise in MS among women over the past 50 years.


Best regards

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