The Charcot Project

[jreagan70]

That is an unbelievable change. We already know that nerves don't magically remyelinate within 3 days, and dead nerve cells don't come back to life in any amount of time. So we know that the rapid improvement absolutely MUST have come from some mechanism other than an effect on the major mechanism that causes damage in MS. So the key is to find out what that mechanism is.

If the effects of the HIV drugs are that magical, then maybe medical science can begin to disregard demyelination as being as destructive as currently believed. Another thing clinical studies can account for is the the placebo effect, which can be miraculously fast. Studies have shown that the placebo effect alone is responsible for improvement a minimum of 30% of the time, and in some cases up to 90% of the time. It has to be accounted for as one of the factors when physical causes are known to be impossible for the improvements.

[Myoak]

Occasionally, we read about persons such as this who have an unexplainable response of immediate improvement with various treatments. I don't doubt them; they just don't seem phony, at all. For example, I have met and spoken with Linda Elsegood who related a similar response using LDN. I totally believe her testimony. Face to face you get a good feel for veracity.

These cases happen but very unlikely others trying the same substance will have a similar immediate response. I guard against reading too much into it one person's experience. I do accept they had a great experience which cannot be explained by current knowledge.

The value may come from studying these cases more closely to see what can be learned. I found this young woman's video interesting because antiretrovirals were involved and I believe a truly effective treatment is going to emerge in this area.

Why this particular young woman experienced recovery so quickly is unknown. But perhaps, she may turn out to be a piece of the puzzle which explains MS better.

Foe me, it does nothing to change the fact that de-myelinated nerves transmit signals slowly and dead nerves don't transmit at all.

We have to learn more for this to be of any value. I don't believe antivirals can be expected to have such immediate effect generally, but may occasionally in isolated cases. I posted the link to help maintain interest because this area of research is so promising but largely ignored by the big pharmas.

[Myoak]

"MIRACLE CURE" experience put into context by recipient Shana Pezaro October 29 2015

“Last night, I was the headline item on the 6.30pm BBC South East News. After filming over the past few weeks at an award ceremony in Brussels where I had won the European Patient Advocacy Award, plus filming at the pub afternoons I organise etc, I really thought the item would be about that!

Instead, it focused on the HIV drugs I took for 28 days and how the drugs very positively impacted on my MS. My experience then prompted a small trial into the use of antiretroviral drugs for treatment of MS.”

It's exciting, but...

“It is, of course, very exciting news when you think of the potential it could have. But there are many things I want to put into perspective.

Importantly, the medication certainly wasn't a "miracle cure". I still had MS, but I could consistently and repeatedly do things I can usually only do at my very best moment, on my very best day. So, I can very, very occasionally bend my leg and lift up my knee like I'm walking up a step.

But I can only do it once, then my legs seize back up into spasticity. On the medication I could do it repeatedly, which meant I could walk up a few stairs. That was truly amazing and very exciting – but it has to be taken in context.

I can sometimes walk, albeit very badly, 10 - 20 metres with a walking frame. With the medication I could walk with crutches! But I didn't 'leap out of a wheelchair' from not being able to walk at all.”

https://www.mssociety.org.uk/ms-supp...Shana_blog_BBC

No long-term effect

“I'd been exposed to high risk of contracting HIV and therefore was given 28 days of the HIV medication as a preventative measure. Who knows whether on day 30 the medication would have stopped having any impact at all on my MS. We have to wait for the longer trial results.

Three days after I finished taking the medication, I had reverted to my 'normal'. There was no long term effect sadly. Of course I would have loved to stay on the drugs, but drugs cannot be given 'off-license'. They simply could not give very major long term HIV medication to someone with MS until it is proven to be safe to do so.”

An individual experience

“MS affects us all very individually and there are many different forms. Personally, I've had MS symptoms from age seven, although I was 28 when I was finally diagnosed. In hindsight I clearly have paediatric onset MS. Every person has a different story, so I really hope that the trial and research coming from my experience will provide some insight into what causes Multiple Sclerosis.

Perhaps there are many different causes requiring different treatments and I stumbled across an effective medication for one of them. Maybe I was a total one-off and this medication isn't the answer and simply doesn't provide the clue we need, but maybe, just maybe, my experience could help to provide an effective treatment for us in the near future.

We just don't know yet. But what I wanted from my experience was a clinical trial to see if the medication could help others the way it helped me. And the trial has happened. Those 28 days were amazing. Now, let's see...” End of Quote.

I broke Shana's story into paragraphs for readability.

The story creating the buzz was this one:

Multiple sclerosis patient walks after taking HIV drugs

http://www.bbc.com/news/uk-england-sussex-34659771

[JerryD]

Thanks for your explanation. Making the story crystal clear is really important. Like showing the audience how the magicians trick is done! But the girl in England did show some temporary improvement! That is better than NO improvement. Is that improvement the result of a 'placebo effect' ? A true clinical trial would answer that !

[Myoak]

Is that improvement the result of a 'placebo effect' ?

Her improvement was astounding, then she reverted back to the norm 3 days after she stopped taking the antiretroviral regimen. Unusual story but it appears quite true.

Was it placebo effect? I don't know but the former piano teacher wept when she could play the piano again; who wouldn't be overjoyed at doing so and climbing a few stairs again after not being able?

Shana herself cautions against reading too much into it. Nevertheless, we wouldn't want to disregard them, either.

I suppose she spoke out because you always have people errantly going overboard with optimism about a story such as this but then the attackers come out to trash the person as giving false hope. You know, the ones who naively maintain there will be no cure until they are fully restored to the same condition they were in pre-MS! Considering malaria, polio or any number of diseases how realistic is that demand of efficacy?

Even with Shana, she said she could navigate a few stair steps, she didn't run up them. She is relatively young so perhaps, her body began functioning better because MS was effectively halted by the treatment and her reserve neurological function kicked in immediately. Or, was it a placebo effect? No one knows.

IMO, Shana knew she would get torched (and she will) so she wanted to address the story. JMHO.

I believe her testimony helps establish that antiretrovirals should be thoroughly studied in MS.

Perhaps, disease societies will take note if enough MSers express an interest in this area!!!!

[Myoak]

A quick review.

HERV (human endogenous retroviruses) are present in every cell of our bodies. They make up about 8% of our DNA. They are remnants of ancient viruses our ancestors were exposed to which became embedded in our genes.

Normally, they not active and cause no problems.

However, in the presence of various infections, such as EBV (the herpes virus which causes mono) HERV replicate (get turned on).

If a HERV virus which is a part of your genetic material replicates, the body responds as if it were developing an immune response to your own body, an autoimmune response.

HERV medicines, anti-retrovirals, may be very effective in controlling MS by acting on HERV which appear to be responsible for provoking the autoimmune response which results in MS.

The Charcot Project tests an anti-retroviral drug in MS patients:

https://www.youtube.com/watch?v=Ss5alRN9voA

[REG53]

Thanks Myoak for the infor., this sounds very exciting and hopefully the answer.

[Myoak]

Thanks Myoak for the infor., this sounds very exciting and hopefully the answer.

You are welcome, Reg! Thank you for your interest. The MS conference last month offered only the abstract of the anti-retroviral trial. I understand the trial is being written-up and hopefully will be published in the next few months. Of course, I will post what I can as it becomes available.

I am optimistic for progress against MS using anti-retrovirals. We'll see what can be learned from this small trial when it gets published.

Research is slow, good research is terribly slow; we hate such delay but we must get legitimate data for it to be of value and that takes time.

God bless you

[Boymom123]

Myoak

Yes, I am taking Copaxone. My last MRI showed only one small additional lesion (older lesion). However, my doctor believes that lesion is from my "active" period before I even started the medication. The next MRI will be the tell.

I am actively watching Ocrelizumab. It will be interesting to see how that works out but I am even more interested in seeing the progression of antiviral treatment. All of these trials keep my hopes very high.

I am early in the MS journey with right now only mild sensory symptoms. I hope and pray every day that as it progresses these new medications and discoveries are FDA approved so that I can keep this horror at bay.

Thank you for all of your insights, I find them invaluable.

[Myoak]

I am actively watching Ocrelizumab.

I am early in the MS journey with right now.

Hello Boymom123,

It is always wise to be looking ahead as you are doing; congrats on staying informed. Ocrelizumab is expected to get FDA approval next year (probably late in the year since the application is expected to be filed in Jan.). I believe it will present another good treatment option.

One school of thought believes that treating MS with a highly effective treatment early on holds the best chance for minimizing MS over a lifetime. IMO, that position has lots of merit. The problem has always been that the highly effective treatments also carry more safety risk. Ocrelizumab may be different in that it appears highly effective but may carry less risk of serious adverse events than Tysabri, or the drugs most would classify as moderately effective... Gilenya, or Tecfidera.

Thank you for your interest in the Charcot Project. Of course, even if the theory proves true that a virus, or viruses are driving MS, a clinical treatment would be years away but certainly welcome and a game changer when it did arrive.

Also, keep your eye on GNbAC1 since it targets HERV which begin replication prompted by EBV.

Best thoughts for your joy and good health!

[Myoak]

A recent article provides insight on the the role of viruses in brain disorders:

Herpes virus can cause development of brain disorders, say scientists
By Darwin Malicdem December 07 2015
http://www.ibtimes.com.au/herpes-vir...ntists-1489971

Quote: “Scientists have found that certain species of herpes virus can potentially infect neurons and cause symptoms of brain disorders.

Earlier studies already showed the link between neurologic conditions and the species of herpes virus. However, it has been assumed that these viruses, called gamma herpesviruses, cannot infect neurons.

But the new study, published in the journal mBio, shows that Epstein-Barr virus (EBV) and Kaposi's sarcoma-associated herpesvirus (KSHV) can infect and replicate in cultured and primary neurons. These herpes viruses could potentially infect patients with Alzheimer's disease, multiple sclerosis (MS) and cerebellar ataxia.

Researchers from the University of Pennsylvania found the viruses enriched in the cerebrospinal fluid and brain tissue of individuals with MS and Alzheimer's disease. In addition, people with a history of infectious mononucleosis caused by EBV are at higher risk of developing MS.

"I couldn't believe it. After 50 years of studying EBV, nobody had ever seen the virus in nerve cells,” said Professor Erle Robertson…” End Quote

[perkylady]

Why is EBV so important in MS?

"Did you know that if you develop infectious mononucleosis (IM) due to Epstein-Barr virus (EBV) infection you are more than twice as likely to develop MS than if you acquire EBV without any symptoms (asymptomatic EBV infection)?

"Even more impressive is that people who don't get infected with EBV are protected from getting MS. In addition, if you have been tested and shown to be EBV negative and then go on to develop MS you always get infected with EBV prior to developing MS.

"These epidemiological insights are the main pillars supporting EBV as the likely cause of MS. What we don't know is how EBV causes MS at a molecular level.

"Does EBV simply trigger the disease and then have nothing to do with ongoing MS disease activity (the hit and run theory)?

"Is on-going EBV infection central to driving MS disease activity (the direct viral hypothesis)?

"Does EBV trigger another virus to act, for example HERVs (human endogenous retroviruses) (the dual-viral hypothesis)?

"Does EBV simply act as an essential cofactor in driving autoimmunity (the danger or co-stimulatory signal autoimmune hypothesis)?

"Does EBV immortalize autoimmune B-cells that drive MS disease activity (B cell hypothesis)?"

"The only way to test these different hypotheses is to do experiments. As there is no good animal model of EBV and MS we need to do these experiments in pwMS."


multiple-sclerosis-research.blogspot.com

Since Pharma, disease societies, and government (NIH) seem much less interested in finding a viral cause and an inexpensive cure for MS this research project will initially be funded by crowdsourcing:

**URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to your Username on black bar running across top of page > My Settings > Edit Profile**

[perkylady]

[QUOTE=perkylady;1487652]Why is EBV so important in MS?

multiple-sclerosis-research.blogspot.com/

The link which was removed by a moderator in my previous post introducing the research project may be accessed from the link above; go to the site and find multiple-sclerosis-research.blogspot.com/2016/01/clinicspeak-crowdfunding -why-is-ebv-so.ClinicSpeak & CrowdFunding: why is EBV so important in MS?. Scroll down the article and click on "Charcot Project 2".

Since Pharma, disease societies, and government (NIH) seem much less interested in finding a viral cause and an inexpensive cure for MS this research project will initially be funded by crowdsourcing.

I hope everyone will check out the link and form their own opinion about the value of this project undertaken to find the cause and a cure for MS!

People with MS and small groups of researchers will have to drive efforts find the cause and cure for MS.

Big pharma, the NIH, and disease organizations seem to focus more on expensive maintenance drugs than cause and cure.

Moderator's note: Live link removed per guidelines #2 and #7

[Myoak]

People with MS and small groups of researchers will have to drive efforts find the cause and cure for MS.

The link to perkylady's post can be Googled as follows:

"Help us find out if we can treat multiple sclerosis with antiviral drugs"

There may be MSers who are interested in a 3 minute video about this type of research. Just Google the title, simple enough!

[Myoak]

Researchers looking for the cause of MS need our support. Please Google:

"Help us find out if we can treat multiple sclerosis with antiviral drugs"

To find out about this current project.

Quote, ""What have we learnt this week about infectious mononucleosis (IM), Epstein-Barr virus (EBV) and MS?

People who develop IM (infectious mononucleosis) due to EBV infection you are more than twice as likely to develop MS than people don't have a history of IM.

People who don't get infected with EBV are protected from getting MS.

If you have been tested EBV negative and go onto develop MS you alway get infected with EBV prior to developing MS.

People infected with EBV shed EBV in their saliva intermittently that may vary with the season.

EBV is transmitted via saliva, which is why it referred in lay terms as the 'Kissing Disease' and more uncommonly by other body fluids.

Peak age of onset of IM is 3-4 years earlier in females (13-14 years of age) compared to males (16-18 years of age).

"As part of The Charcot Project we are proposing using viral shedding of EBV as a readout for antiviral drugs targeting EBV. Before we can do this we need to know how many pwMS shed EBV in their virus serially over several weeks."

Quoted form BART's MS Blog 1/9/16