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A new hope for cure
millstones
Posted: Thursday, May 17, 2012 8:34:26 AM

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DeeBee wrote:
It has been said many times before but 'promising compounds' that have been available for many years could be tried on DM dogs and equine MND. It's always very quiet on the pooch & nag front which is a pity because success in these creatures would be a very clear indication of efficacy free from placebo.


Dee Bee ,
Haven't found a horse but here is a doggy walking again. Not ALS but paralysis eradicated.

http://www.neuropathie.nu/patients-on-youtube-movies/ten-year-old-paralysed-king-charles-spaniel-runs-again-after-nor.html
millstones
Posted: Thursday, May 17, 2012 8:42:36 AM

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DeeBee wrote:
It is not crystal clear from the Normast info how PEA is made, where exactly does it come from and who is providing the raw materials..........

http://www.ergomaxsupplements.com/information-about-normast/

If it is truly effective it must cease to be 'alternative/unproven' and become part of mainstream medicine as soon as possible.


A search seems to suggest it is derived from eggs soya and peanuts. Unless you have a peanut reaction none of these sound like they will do you much harm.

John
millstones
Posted: Thursday, May 17, 2012 8:46:02 AM

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avoutersterp wrote:
still sounds like fake
people who are completely paralyzed have no hope with pea?

Unless the muscles are completey atrophied surely they will respond to returning motor nerve signals.

John
moonlight
Posted: Thursday, May 17, 2012 8:46:36 AM

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Hi all,

I just read all your posts about PEA / Normast: sounds interesting.

After searching for these compounds on Google I found this website:

www.painkillernormast.com

I think it gives lots of information and could be useful to obtain more info about these promising products.

Good luck everyone [Angle_Smilies]
DeeBee
Posted: Thursday, May 17, 2012 8:58:37 AM

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millstones wrote:


Dee Bee ,
Haven't found a horse but here is a doggy walking again. Not ALS but paralysis eradicated.

http://www.neuropathie.nu/patients-on-youtube-movies/ten-year-old-paralysed-king-charles-spaniel-runs-again-after-nor.html


Hi John

Yes indeed, but I suppose this would be in the 'anecdotal' category? I have seen YouTube presentations of paralysed dogs and goldfish recovering after a good 'Wanding' so I guess anything is possible in cyberspace.
Olly
Posted: Thursday, May 17, 2012 11:52:58 AM

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Palmitoylethanolamide reduces granuloma-induced hyperalgesia by modulation of mast cell activation in rats

Introduction.

Mast cells (MCs) are well recognized as a "body guard" in host defense reactions, as inducers of innate and acquired immunity and tissue remodelling, because of their pivotal role in initiating allergic reactions. Moreover, in recent years, MCs have also been acknowledged to modulate the inflammatory process [1].

Their contribution to neuro-immune processes remains, however, less clear. There are many independent lines of evidence that indicate massive, bidirectional cross-talk between MCs and sensory nerves (SNs) suggesting that MCs and SNs may be functionally [2] and anatomically assembled within certain tissues [3,4].

In the skin, for instance, MCs are frequently co-localized with nerve fibres expressing substance P (SP) and calcitonin gene-related peptide (CGRP) and/or other peptidergic mediators [5]; moreover, activated MCs produce and release histamine, serotonin, and tryptase leading to SNs activation thus contributing to neurogenic inflammatory reactions [6]. Above all, MCs by releasing NGF and TNF-α, are thought to regulate SNs development, degeneration, and regeneration [7,8]. Therefore, MCs and SNs have been suggested to co-orchestrate a variety of physiological and pathological processes, such as hair follicle cycling, wound healing, stress responses and to contribute to the pathogenesis of inflammatory and autoimmune diseases [9,10].


In several animal models of inflammatory pain, including complete Freund's adjuvant-induced arthritis [11], carrageenin-induced paw oedema [12] and a rat model of cystitis [13,14], NGF expression was found to be increased. Moreover, it has been shown that over-expression of NGF results in a marked nerve fibre hyperplasia in the urinary bladder submucosa [15]. Recently, the administration of a new molecule sequestrating endogenous NGF has shown to reduce acute and chronic inflammatory processes and associated pain [16]. These studies suggest that peripherally produced NGF is involved in the development and maintenance of nociceptive sensory neuron sensitivity and that an up-regulation of NGF is responsible for alterations in pain-related behaviour [17]. Therefore, blockade of NGF production and/or its action has been proposed as a novel strategy to avoid nerve hypersensitivity induced by inflammation, and possibly as a novel non-canonical anti-inflammatory analgesic drug [18].

A class of molecules potentially able to control NGF synthesis and release is represented by ALIA compounds (from the acronym Autacoid Local Injury Antagonist), naturally-occurring lipid amides deriving from membrane fatty acids and structurally related to endocannabinoids. Palmitoylethanolamide (PEA) is considered the most important of the ALIAmides because of its ability to negatively modulate MC activation [19,20].

Although considerably more abundant than the endocannabinoid anandamide (arachidonoyl ethanol amide: AEA) or 2-arachidonoylglycerol (2-AG) in many tissues, the effects of PEA are less well know than those of AEA or 2-AG, probably due to its puzzling mechanism of action. In fact, PEA, although structurally related to AEA is inactive at the cannabinoid CB1/CB2 receptor site, but it exhibits several important pharmacological effects shared with endocannabinoid compounds, such as marked anti-inflammatory, anti-oedema and analgesic properties in a wide range of experimental models of inflammation [21]. There are several pieces of evidence indicating that PEA might represent part of a "parallel" endocannabinoid signalling system, with its own putative receptors.

To date, peroxisome proliferator-activated receptor-α (PPAR-α) and G protein-coupled receptor 55 (GPR55) have been suggested as endogenous putative receptors for PEA, since their stimulation contributes to some of PEA-induced anti-inflammatory and analgesic effects.
Moreover, it has been demonstrated that PEA significantly reduces peripheral pain through a mechanism that is enhanced by AEA and blocked by CB2 receptor antagonists [16]. The mechanism through which PEA exerts its anti-nociceptive effects remains unclear since it does not interact with the CB2 receptor. Therefore, it has been postulated that this compound might evoke analgesia through a still uncharacterized CB2-like receptor [16], probably expressed specifically on MCs [19]. Alternatively, several important actions of PEA seem to be mediated by none of these receptors, but independently of any receptor activation [22].

The effect of PEA on NGF release leads to a reduction in the number of nerve fibres in λ-carrageenin-induced granulomatous tissue. These results are consistent with the well known role of NGF, able to produce nerve sprouting within and close to injured tissue [34], an effect due to the neurotrophic ability of NGF to affect neuronal growth, neuronal survival and axonal outgrowth [8]. The decrease in the number of nerve fibres observed in the histological analysis of PEA-treated animals was also seen to occur in parallel with a concentration-dependent decrease in PGP 9.5 protein expression, a cytoplasmic protein present in neurons and neuroendocrine cells, useful to visualize several different populations and subtypes of nerves, which confirmed our previously discussed results.

Therefore, it seems possible to justify the lower pain sensitivity exhibited by rats treated with PEA considering the reduced number of nerve fibres obtained with PEA treatment which is associated with a decrease in NGF. In fact, NGF is considered to be not only a promoter of neuronal sprouting, but it is also involved in neural sensitization since it increases the excitability and the firing of sensory neurons [35-37].

Our results are in agreement with previous data showing that administration of PEA produces antinociception in the formalin test [38], reduces inflammatory hyperalgesia and oedema by inhibiting MC degranulation [39] and inhibits mechanical hyperalgesia after intraplantar carrageenin challenge in animals [40]. Moreover, the results reported in the present study are consistent with a recent study demonstrating that the anti-hyperalgesic action of PEA in a model of neuropathic pain depends, at least in part, on the reduction in NGF up-regulation [32].

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3034677/



Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
Olly
Posted: Thursday, May 17, 2012 12:02:34 PM

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Looking at NGF in ALS and whether blocking of NGF would do any good, following my post above:


Astrocytic production of nerve growth factor in motor neuron apoptosis: implications for amyotrophic lateral sclerosis

Reactive astrocytes frequently surround degenerating motor neurons in patients and transgenic animal models of amyotrophic lateral sclerosis (ALS). We report here that reactive astrocytes in the ventral spinal cord of transgenic ALS-mutant G93A superoxide dismutase (SOD) mice expressed nerve growth factor (NGF) in regions where degenerating motor neurons expressed p75 neurotrophin receptor (p75NTR) and were immunoreactive for nitrotyrosine.

Cultured spinal cord astrocytes incubated with lipopolysaccharide (LPS) or peroxynitrite became reactive and accumulated NGF in the culture medium.

Reactive astrocytes caused apoptosis of embryonic rat motor neurons plated on the top of the monolayer.

Such motor neuron apoptosis could be prevented when either NGF or p75NTR was inhibited with blocking antibodies.

http://onlinelibrary.wiley.com/doi/10.1111/j.1471-4159.2004.02357.x/full


Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
Olly
Posted: Thursday, May 17, 2012 12:12:03 PM

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21st International Symposium on ALS/MND - Days 2 & 3 Recap
12/23/2010
By: Robert A. Goldstein


Dr. Ferraiculo of the University of Sheffield followed Cleveland at the podium, and focused his talk on describing the role of the lactate shuttle in disease progression. His research showed that impairment of the lactate shuttle at various time points before disease onset could rescue motor neurons.

His research led him to the NGF-P75 signaling pathway in astrocytes as a target for therapeutic intervention. Ferraiculo found that in SOD1G93A astrocytes, NGF was overacting by nearly 30% more compared to wild-type astrocytes.

In fact, his research found that pro-NGF levels were twice as high.

This led him to design several in vitro experiments in which he co-cultured normal motor neurons with SOD1 astrocytes. What he found was that normal motor neurons express higher levels of P75 in that environment.
then looked to correlate his findings to the human population of pALS, and found that P75 is over expressed in SOD1 patients’ spinal cord and NGF is over expressed in the CSF from sporadic ALS patients, although the numbers of pALS used in that analysis was not given (Ferraiuolo et al., 2010).


http://www.als.net/Media/5382/News/

Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
Olly
Posted: Thursday, May 17, 2012 12:19:27 PM

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Still looking at NGF and what occurs if it is upregulated.

Increased glutathione biosynthesis by Nrf2 activation in astrocytes prevents p75NTR-dependent motor neuron apoptosis

Astrocytes may modulate the survival of motor neurons in amyotrophic lateral sclerosis (ALS). We have previously shown that fibroblast growth factor-1 (FGF-1) activates astrocytes to increase secretion of nerve growth factor (NGF).


NGF in turn induces apoptosis in co-cultured motor neurons expressing the p75 neurotrophin receptor (p75NTR) by a mechanism involving nitric oxide (NO) and peroxynitrite formation.

http://onlinelibrary.wiley.com/doi/10.1111/j.1471-4159.2006.03742.x/full

From one of my earlier postings:

Moreover, the results reported in the present study are consistent with a recent study demonstrating that the anti-hyperalgesic action of PEA in a model of neuropathic pain depends, at least in part, on the reduction in NGF up-regulation [32].


Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
ichisan
Posted: Thursday, May 17, 2012 11:55:10 PM
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Olly wrote:
Moreover, the results reported in the present study are consistent with a recent study demonstrating that the anti-hyperalgesic action of PEA in a model of neuropathic pain depends, at least in part, on the reduction in NGF up-regulation [32].
Olly,

This is a major finding, in my opinion. It might even be a breakthrough because it explains why ALS targets motor neurons and not sensory neurons. It also explains the amazing results reported by Dr. Simonetta Clemente in her study of the effect of PEA on ALS patients. A reduction of both NGF and inflammation would give motor neurons time to regenerate leading to rapid functional recovery.
DeeBee
Posted: Friday, May 18, 2012 5:17:15 AM

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I tried to find Dr.Simonetta Clemente on facebook but she turned out to be a horse. However, I had more luck during my second trawl but I am still not sure about the identity of the speaker in the video lecture........

http://www.sardegnasalute.it/index.php?xsl=313&s=196345&v=2&c=3436
HappyPhysicist
Posted: Friday, May 18, 2012 9:11:49 AM
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Google translation:


Quote:
CAGLIARI, May 10, 2012 - Dr. Simonetta Clemente, Specialist Rehabilitation Center Macon ASL of Nuoro, has experienced a new rehabilitation therapy for Amyotrophic Lateral Sclerosis (ALS), presented in Milan during the second day of the XII Congress National SIRN, the Italian Society of Neurological Rehabilitation.

The SLA, neuro-degenerative disease that affects about one in every 100 (mostly men of middle or advanced age), was treated by the author of the discovery with the PEA - "palmitoylethanolamide" (endogenous compound with antiinflammatory properties cannabinergico effect, discovered years ago by Italian scientists, including Nobel Prize winner Rita Levi Montalcini), with the 'goal of improving the effects of rehabilitation in these patients, is rendered completely ineffective due to the degeneration of motor neurons and progressive atrophy muscle.

"The study - said Clement - has shown that the PEA determines an immediate motor effect, blocking the progression of the disease, while the patient has a subjective perception of improvement and can do things which before were closed. This effect allows you to implement a rehabilitation plan that quickly determines the functional recovery, accompanied by the reappearance of the muscles. The cases on which the PEA has been tested only two, but we hope that you can start your research with patients at different stages of severity, experiencing the active ingredient together with a targeted rehabilitation. "


If it is done in secret, it is done in vain.
parrotfish44
Posted: Friday, May 18, 2012 9:31:23 AM
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Spider wrote:



Here we go:

http://www.ergomaxsupplements.com/normast-600mg-tabletten

Please read Starter Protocol on dosing advice.


Just ordered the packets as well a the tablets. will let this thread know if it helps.

mini bio
Bulbar Onset diagnosed 1-11 Male 68 yrs
peg tube yesterday can swallow some
severe weight loss. muscle waste

extremities still work but weak









DeeBee
Posted: Friday, May 18, 2012 9:59:37 AM

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Is it too late to invite Simonetta to the Symposium?

( She could demonstrate her rehabilitation with Normast ).
ELYSEE RECLUS
Posted: Friday, May 18, 2012 10:27:01 AM

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All this story Sounds like a big joke.
What is "targeted rehabilitation" Supposed to be?
sunsmile
Posted: Friday, May 18, 2012 10:35:10 AM
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Dee, I wrote dr. Clemente a couple of days ago, so far no feedback.

I also asked in an italian' ALS forum, it seems some of the forum members will meet her, most probably next week. Furthermore, she, again, stressed about the fact that Normast alone without the right reabilitation regime, is basically useless.

I will keep you posted.
millstones
Posted: Friday, May 18, 2012 10:54:27 AM

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ELYSEE RECLUS wrote:
All this story Sounds like a big joke.
What is "targeted rehabilitation" Supposed to be?


Marcel,

Sounds to me as if the physiotherapy is concentrated on the area where the patient feels some returning mobility.

Hopefully it is not a scam. She works for an institution set up in Sardinia to research ways of treating als. I cannot see how she could benefit from making this up. She does not appear to have any connection to the PEA manufacturers.

It does seem curious that only 2 people have had the benefit of the treatment. I would imagine there would be a lot more people available to her in a specialist facility to try the protocol on.

John
Spider
Posted: Friday, May 18, 2012 11:05:16 AM
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sunsmile wrote:
. . . she, again, stressed about the fact that Normast alone without the right reabilitation regime, is basically useless.


So:

Normast with no rehabilitation = completely useless.
Normast with rehabilitation = stopping ALS progression with muscular 'reappearance'!

Well, my suspicion is growing by the minute. Sounds like too much of a clear cut.

Nevertheless, have had two Normast sub-lingual doses so far with no benefit. Look forward to Dr. Clementes response on the physio regime.















DeeBee
Posted: Friday, May 18, 2012 11:24:39 AM

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Without a biomarker, how can Dr.Clemente assume patient improvement with confidence? Most people feel better after a hot bath and mild exercise.


NB.
'PEA first attracted attention in 1957, with its isolation from soybeans, peanuts, and egg yolk and identification of anti-inflammatory activity'.
roy
Posted: Friday, May 18, 2012 12:11:59 PM
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Also made a bet. A packet and a bottle of the 600 mg PEA. I think "useless without exercise" would simply mean a continued loss due to to muscle atrophy regardless of what pill is used. At least I hope that is what she meant. We shall see. Will keep, and post here: records on grip strength, self feeding, speech recordings, that sort of thing. Roy
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