Endotherapia (GEMSP) as a customized treatment for ME/CFS?

[Jesse2233]

I discovered this while researching novel autoimmune treatments. It's another one I haven't seen discussed on PR, though it's mentioned alongside Rituximab in this paper from Molecular Neurobiology as a potential treatment for ME/CFS. Early trials have shown good results in MS (1), ALS (2), and RA (3) without toxicity. Followup showed continued benefit in MS patients (4)

Endotherapia is a subligual tablet with a blend of fatty acids, antioxidants, aminco acids, and radical scavengers customized to one's immunological blood work, brain imaging, and symptoms. It's delivered via poly-L-lysine (which allows for better cell permeability). The end result is a reduction in oxidative stress and inflammation, and an improvement in neuroprotection.

I can see this treatment fitting in well with the "refill the tank" step of Dr Naviaux's proposed 3 step protocol.

Endotherapia was developed by professor Michel Geffardat at the IDRPHT in France.

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Here is a breakdown of the ingredients used in Endotherapia by disease. The first article suggests using the MS preparation (GEMSP) for ME/CFS. I imagine it would be further customized based on the individual.

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More on Endotherapia

From "The Emerging Role of Autoimmunity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/cfs)"

Endotherapia is an immunopathological strategy addressing pathology which seems to underpin chronic incurable diseases whose etiology is multifactorial.

It involves the combination of an evaluation of circulating immunoglobulins directed against specific neo-epitopes that created ROS elevation.

GEMSP is a preparation of numerous small molecules, including fatty acids, anchorage molecules, antioxidants, radical scavengers, amino acids, ligated to linear chain of poly-L-lysine (PLL) which are non-immunogenic and inhibit inflammation and O&NS processes. Each individual linkage affords significant advantages.Importantly, it prevents metabolic degradation of the linked molecules and enables a long half-life and confers stability on the various linked chemical entities. Membrane permeability is increased and the induction of various viral and bacterial components. These features combine to induce neuroprotection.

Full article

And "Endotherapia: A New Frontier in the Treatment of Multiple Sclerosis and Other Chronic Diseases"

Endotherapia is a new biomedical and therapeutic approach for the treatment of chronic diseases, including autoimmune, neurodegenerative, and proliferative diseases. It is based on a pathophysiological concept that takes into account genetic predisposition and immunological events, together with bacterial and environmental factors.

It includes: a) clinical aspects, paraclinical exams (Magnetic Resonance Imaging, MRI),and biological examination, allowing an exact diagnosis of the disease; b) the identification of specific circulating antibodies in the serum of patients suffering from chronic diseases; and c) the use of therapeutic tools,such as small compounds linked to poly-L.Lysine(PLL), whose physiological actions are well known.Here, we focus on two specific aspects of Endotherapia:1) the identification of circulating antibodies as a means to follow up on chronic pathology and 2) the therapeutic drugs used against those pathologies [MS, amyotrophic lateral sclerosis (ALS), and rheumatoid arthritis (RA)

Full article

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An ALS patient who traveled from Australia to France for the treatment reports good results:

For me, I am now entering into week 12 of my Endotherapy medication. I take it 3 times a day. In terms of results, I was advised (based on previous patients) not to expect to notice too much in the first 3 months. So, I impatiently complied with the regime.

So far so good...
Within myself I can definitely say that I feel as though any progression of the disease has slowed considerably. I could almost say that it's likely at a stand-still (but I'm trying not to get too excited too early). Energy levels are rising and very rarely do I need to rest during the day. My friends and family - especially some I haven't spoken to in a while- have commented on many occasions that my speech is a lot clearer and has picked up speed. I have noticed this also, however it is not yet consistent. On occasions where I am exhausted my language reverts back to a mild and sometimes moderate speech deficit (slurred, slow, and mispronounced in nature - comparable to my prior baseline). On the up side, every other day feels like I've gained a little more of my ‘self’ back.

Full post

 

[Murph]

I am positive about this idea to the extent that it looks low risk, has some data in support, and it is in its infancy.

The data cited in that paper look decent:

In an open clinical MS trial (phase IIa), 22 sec-ondary progressive-phase patients were treated with a
sublingual formulation over six months; in that trial, 55% of the patients became stabilized or their EDSS(Expanded Disability Status Score) was decreased (18%), instead of the normal progression of the disease,
and only 27% of the patients followed a normal disease progression (i.e., increase in the EDSS) (Mangas et al.,
2010)

But when I go looking for reasons to be skeptical, I find a couple quite quickly.

E.g., the Australian woman you cite has had to stop posting online due to the progression of her disease. Before that, she wrote this:

I’ve been on the medication from France now for virtually 9 months and at first I was expecting that if it was to work, it would work across all fronts – slowing or even stopping ALL deterioration and at best even leading to some repair and improvement.

After 9 months I can see that there are (so far) “mixed results”. Some things have improved; some things have stayed much the same and realistically, some things have sadly continued to deteriorate, though it seems at a much slower rate.

There’s no doubt that the overall rate of deterioration though has slowed, and I have less muscle pain/spasms which help with better sleep. It’s definitely been beneficial. I’m pleased and relieved. Still very hopeful of an eventual cure.

It is of course unclear if the disease would have progressed even faster without treatment. It is also unclear if the treatment might work for MS but not MND.

The other thing that raises questions is that most of the research comes from one researcher. One to keep an eye on though!

 

[Jesse2233]

Good points @Murph

It's too bad she worsened, though with ALS that's not unexpected.

Doesn't seem like endotherapia is likely to be a cure, but it can perhaps be a supportive bridge that works in conjunction with other treatments. And like you said, it's nice that it's low risk.

To contexualize it in a treatment protocol:

1. Remove the trigger: Rituximab or Rega Compound 17

2. Refill the tank: Endotherapia and various metabolites determined by metabolomics

3. Flip the switch: Suramin or another anti-purinergic therapy

 

[Gingergrrl]

Jesse, am confused what endotherapia actually is? Is it a custom made sublingual tablet or some other mechanism? Also where would someone get it from? A naturopath (ND) or mainstream doctor? Am trying to understand what it is?!

 

[Jesse2233]

Jesse, am confused what endotherapia actually is? Is it a custom made sublingual tablet or some other mechanism? Also where would someone get it from? A naturopath (ND) or mainstream doctor? Am trying to understand what it is?!

It took me a while to figure it out too, the studies don't make it very clear. It's a customized sublingual with various nutrients based on your blood work, brain imaging, and symptoms. It has a special delivery mechanism that gets the nutrients directly into the cell.

Right now the only person who's providing it seems to be the French professor who developed it. I have reached out to him to see if it's available for purchase.

 

[Gingergrrl]

It took me a while to figure it out too, the studies don't make it very clear. It's a customized sublingual with various nutrients based on your blood work, brain imaging, and symptoms. It has a special delivery mechanism that gets the nutrients directly into the cell.

Right now the only person who's providing it seems to be the French professor who developed it. I have reached out to him to see if it's available for purchase.

Interesting and keep me posted if you learn anything more!

 

[Jesse2233]

Interesting and keep me posted if you learn anything more!

Will do!

 

[boombachi]

It makes a lot of sense to me but my understanding of science is non existent so that doesn't mean a lot. @Jesse2233 please tag me if you hear anything from the french professor.

 

[Jesse2233]

It makes a lot of sense to me but my understanding of science is non existent so that doesn't mean a lot. @Jesse2233 please tag me if you hear anything from the french professor.

You got it!

 

[Jesse2233]

@boombachi @Gingergrrl

heard back from the professor today

he's requesting a sample of my blood to see if I have the autoantibodies against neo-epitopes he's identified and offering to let me try the sublinguals

I'm intrigued but cautious, does anything see a possibility for adverse effects from what I've posted?

 

[perrier]

@boombachi @Gingergrrl

heard back from the professor today

he's requesting a sample of my blood to see if I have the autoantibodies against neo-epitopes he's identified and offering to let me try the sublinguals

I'm intrigued but cautious, does anything see a possibility for adverse effects from what I've posted?

Please keep us posted, and if you have the prof's website, address, please post. Merci.

 

[Jesse2233]

@perrier I will PM you

 

[Gingergrrl]

@Jesse2233 Thanks for tagging me and I want to re-read this whole thread later from home before I give an opinion!

 

[Philipp]

Is cholesterol-pll-oleic a potential lxr-agonist or do they just have similar names? Sorry if I am mixing something up, bit foggy right now, but I believe there was something about sterol-derived stuff being a ligand in your lxr thread...

 

[Jesse2233]

Is cholesterol-pll-oleic a potential lxr-agonist or do they just have similar names? Sorry if I am mixing something up, bit foggy right now, but I believe there was something about sterol-derived stuff being a ligand in your lxr thread...

Good question, not sure but I'll look into it

 

[Jesse2233]

@Philipp i can't find anything specific about LXR and chlorestorol-pull-oleic but since sterols are broadly agonist of LXR there's a possibility it would be

 

[Jesse2233]

@Jonathan Edwards in your opinion does this treatment have a basis to address autoimmunity?

 

[Gingergrrl]

@boombachi @Gingergrrl heard back from the professor today... he's requesting a sample of my blood to see if I have the autoantibodies against neo-epitopes he's identified and offering to let me try the sublinguals... I'm intrigued but cautious, does anything see a possibility for adverse effects from what I've posted?

I've read through it again to refresh my memory but am afraid I just don't know enough about this to give you an opinion. I have no idea if it could help or have adverse affects! But keep me posted if you learn more.