ultimate treatment?

December 13, 2004

If you had all the money in the world - what would be the ultimate

- what doctor(s) would you go to, what treatment(s) would you

seek?

ps. supposed to be getting a settlement soon, just trying to

decide what to do next.

thanks,

Skeesix

December 14, 2004

>> If you had all the money in the world - what would be the

ultimate... <<

------

Hi:

*** This is simply my take and perhaps I come at this from a little

different perspective, but I think the most promising new work is

that of researcher Gozes and VIP-related agents.

These agents are currently in the pipeline and/or clinical trials =>

" ....Further to the highly promising AL-108 product, Allon is

developing two additional neuroprotective drug candidates. Glial

cells also secrete a complex of proteins biochemically isolated as a

VIP stress-response factor known as the activity-dependent

neurotrophic factor(ADNF). ADNF was shown to be neuroprotective and

a nine amino acid sequence,(Ser-Ala-Leu-Leu-Arg-Ser-Ile-Pro-Ala=

SALLRSIPA; also known as ADNF-9 or AL-209) was identified as the

shortest active form of ADNF. "

__ AL-209

In preclinical development, AL-209 shows neuroprotection from the

following.

_oxidative stress induced by oxidative reagents including hydrogen

peroxide

_neurotoxic Alzheimer's Disease related peptide beta-amyloid

_excitotoxicity induced by NMDA and presenilin 1 mutation

_dopamine induced toxicity

_excess iron sulphate toxicity

The AL-209 development program includes further validation of its

neuroprotective efficacy, dose ranging studies in GLP-like animal

models, and in-house toxicity studies. The GLP toxicokinetic program

for AL-209 is anticipated to commence in H2 2004 and clinical

introduction would be possible by H1 2005.

__ AL-309

AL-309, a chemical enhancement of SAL using 'D' amino acids as

synthetic building blocks, retains many of the neuroprotective

properties of its parent compound.

AL-309, is neuroprotective in in vitro assays including the

tetrodotoxin electrical blockade assay and toxicity caused by excess

alcohol on cultured cell. AL-309 has shown neuroprotective effects

in animal models related to AD, and in an animal model related to

fetal alcohol syndrome.

AL-309 was developed in order to achieve an orally available

neuroprotective drug candidate. Bioavailability studies show AL-309

is orally available, which has advantages in some circumstances

compared to intravenous delivery routes for chronic daily dosing. AL-

309 is being further validated by oral delivery in animal models

related to chronic neurodegenerative disease.

The AL-309 development program includes oral formulation

development, validation in further chronic neurodegeneration animal

models and GLP-like dose ranging studies. The GLP-toxicokinetic

program for AL-309 could commence in early in 2005 with clinical

introduction possible by late 2005.

`````

Again, just my take,

Cyn McLaughlin

Los Angeles

___________

____________________

December 14, 2004

Pliopys and Pliopys did a cross-over study which found 3000mg (3g) of

L-Carnitine produced useful results:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui

ds=9018019 & dopt=Abstract

Another study found various forms of carnitine useful (see below)

http://www.intermedclin.com/abstract.htm

I've found L-Carnitine useful and also when I stopped taking it or ran out,

disimproved like in Vermeulen study.

These sort of quantities can be expensive to take, especially on a

continuous basis but if money isn't a problem...

(www.iherb.com is the cheapest place I've found especially if buy in bulk -

if anyone else knows anywhere cheaper, please let me know).

As I've try to explain in this piece:

http://listserv.nodak.edu/scripts/wa.exe?A2=ind0411D & L=co-cure & P=R3124

" How much should one give to ME/CFS research? - what about a

target of 1% of what one spends on trying to get better? "

it'd be great if people gave 1% (or more) of what they're spending trying

to get better on research.

Such research might, for example, bring up new treatments; also might give

pointers as to what existing treatments might work and what probably

wouldn't work. Also what treatments might be dangerous and what

complications people may need to look out for.

Tom

http://www.intermedclin.com/abstract.htm

CARNITINE, ACETYLCARNITINE AND PROPIONYLCARNITINE IN THE TREATMENT OF

CHRONIC FATIGUE SYNDROME

RCW Vermeulen*, HR Scholte**

* CFS Research Center Amsterdam , Amsterdam , The Netherlands

** Erasmus University Rotterdam , Rotterdam , The Netherlands

We treated 150 patients with complaints of Chronic Fatigue Syndrome (CFS,

CDC 1994 criteria) in an open label study with 1 g oral L-carnitine bid.

After 6 months 104 patients (69%) reported improvement of symptoms of

fatigue, cognition and/or pain.

Another 18 CSF-patients were included in a randomized double blind study.

Six were treated with oral acetyl-L-carnitine 1 g/d plus L-carnitine 1 g/d,

6 received twice the dosage and 6 placebo. After 6 months major improvement

was reported by 4 patients in the low dosage group, none in the high dosage

group and 1 in the placebo group.

We included 90 CFS-patients in an open study of acetyl-L-carnitine 1 g bid,

propionyl-L-carnitine 1 g bid or both. The endpoints of the study were the

Clinical Global Impression (CGI), fatigue score (MFI-20), cognition (Stroop)

and pain (MPQ-DLV). At screening, patients complaints and cognitive

performance were assessed. This was repeated after 2 months no-treatment

period, then patients were randomly distributed in 3 groups and treated for

6 months. Two weeks after the last visit in the treatment period, patients

were seen for follow up.

In the no-treatment period 15% improved (CGI). After treatment for 6 months

61% improved in the single, low dosage groups and 36% in the double, high

dosage group (p= 0.05). The improvement after 6 months was significant in

all groups for the CGI, the fatigue score and the Stroop test (p<0.05).

Plasma free-carnitine levels at randomization correlated positively with

clinical improvement (DCGI, p=0.013; D fatigue-score, p=0.008).

At follow up, 52% of patients in the low dose and 41% in the high dose group

had a relapse of CFS.

These studies indicate that L-carnitine, acetyl-L-carnitine and

propionyl-L-carnitine are successful for the treatment of symptoms of

chronic fatigue syndrome in a major subset of patients.

CFS Research Center Amsterdam,

Waalstraat 25,

1078 BR Amsterdam ,