K-PAX: The long-awaited preliminary results... - Ramsays Disease

Ramsays Disease

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K-PAX

Halflife profile image
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The long-awaited preliminary results from the K-PAX Synergy Trial are out. While both the patient group and control groups showed improvements, the difference between the two was not statistically significant. The Synergy Trial was designed to produce an FDA-approvable treatment for Myalgic Encephalmyelitis/Chronic Fatigue Syndrome. The double-blinded, placebo-controlled trial evaluated the safety and efficacy of methylphenidate (generic Ritalin), combined with a mitochondrial support nutrient formula over 12 weeks. The outcome measurement tool used in the study was the Checklist Individual Strength (CIS), a patient-reported symptoms questionnaire specifically developed to evaluate CFS symptomatology.

solvecfs.org/preliminary-re...

Support nutrient has my interest more than Ritalin

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Halflife profile image
Halflife
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budgiefriend profile image
budgiefriend

Thanks for posting this. I am always grateful for other ME sufferers who can wade through this kind of article and understand what it means in a way I can't. With topics this specific and scientific, my brain just locks down and refuses to function.

I do appreciate being able to skim over them in a general way and take note if the results are good and may indicate improved diagnosis or treatment. That's about all I can even partially retain, unfortunately.

slowmotion profile image
slowmotion in reply tobudgiefriend

Same for me LOL brain lock down :-)

Ian123 profile image
Ian123

Comment at the bottom of statistical significance avoiding saying that it didn't work.

Research into mitochondrial dysfunction has practical benefits in no harm where graded exercise causes harm for many.

budgiefriend profile image
budgiefriend in reply toIan123

I certainly agree with that, Ian

RockRose profile image
RockRose

Thanks so much Halflife, so interesting to see.

I'm inclined to agree with you on the mitrochondrial support nutrients.

I'm no scientist, though very interested - but first glance comparing 2 studies, one with, one without, does appear to point that way?

Do we have any clue what these mitrochondrial support nutrients might be?

Because, if they cause no harm and potentially are for the good, then possibly something for some of us to explore whilst waiting for research to translate from lab to 'licensed', 'validated' treatment?

Wonder what you think?

Thanks again for sharing, Halflife- appreciated ! :-)

Ian123 profile image
Ian123

The CFS Nutrient Formula to be used in this trial is a broad-spectrum micronutrient supplement that provides CFS patients with vitamins, minerals, and other cofactors (amino acids and antioxidants) to complement the low-dose CNS stimulant (methylphenidate). In other words, therapeutic dosages of micronutrients are provided to support the functioning of the nervous, endocrine, and immune systems to a level at which a low dose of methylphenidate may produce positive clinical effects on CFS symptoms and also be well tolerated.

kpaxpharmaceuticals.com/pro...

Very little detail in that so following the logic that a HIV / Aids treatment will transfer this faq has some answers kpaxvitamins.co.uk/frequent...

budgiefriend profile image
budgiefriend in reply toIan123

I read something somewhere the other day (I am sifting through the thick clouds that surround my sieve brain but coming up with nothing specific at all)

It said that we should be very careful about adding anything whatsoever (even multi-vitamin supplements) if we are taking pain medications, and particularly opioids of any kind or NSAIDs on a regular basis. I was surprised because it said even a daily aspirin can interact badly with some things that are in vitamin supplements or with some medications. I believe that calcium supplements were also mentioned.

The caution was that a doctor or pharmacist should be consulted before we take any other thing to make sure that it won't affect the balance negatively.

Personally, I would not trust a doctor to know these things. I have had bad experiences in the past with them not paying attention to such information or not knowing or bothering to look it up. I think I'd prefer to go to a reputable drug information website and write for information about possible difficulties mixing a new substance.

However, it they can help, it would be great to try, provided they are reasonably affordable. With the mixture you mentioned, I would guess they would be costly.

Seascape profile image
Seascape in reply tobudgiefriend

My local chemist shop is very good for advise with drugs supplements and all those things I often pick their brains before asking my doctor.

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