Snow Leopard
Senior Member (Voting Rights)
We've seen plenty of trials like this for other illnesses, they're rarely successful, unfortunately.
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Trial of Long Covid treatment - AXA1125 from Axcella Therapeutics, 2021
- Thread starter rvallee
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It depends on your measure of success, and your point of view.
If you check out some of @Jonathan Edwards comments then you'll see that there's no evidence of classical autoimmunity in ME/CFS though there is support for a trial to look for autoantibodies.
There's a thread here* re a new method to detect autoantibodies [REAP] - Aaron Ring at Yale is doing some ME/CFS work with Maureen Hanson on this and I recall that Aaron recently got a SOLVE award.
Autoantibodies - bit frustrating, never mind copaxone being a decoy --- auto-antibodies in ME/CFS seem to be.
*https://www.s4me.info/threads/reap-...-the-human-exoproteome-2021-wang-et-al.20747/
Interesting. Is there a reliable test for ---accumulating lactic acid in their muscles? Plus, as you've pointed out - where's the data/study?
Above in the thread I jokingly commented, when we found out the AXA1125 components, that it sounded a lot like chicken. I checked out the specific animo acids:
"Animal and plant foods that contain complete proteins or all amino acids include: Red meat. Chicken..."
In 100 g of chicken meat (various sources) [in the AXA1125 stick pack]
Leucine 2.00 g vs 1.00 g in AXA1125
Isoleucine 0.375 g vs 0.5g. (1.5g in 100g of beef).
Valine 1.66 g vs 0.5g
Arginine 2.00 g vs 1.81 g
Glutamine 5.00 g vs 2.00 g
NAC is a precursor to cysteine. Cysteine 0.336 g NAC 0.15 g
Basically, if you eat a small serve of animal protein each day and the rest of your diet has dairy food, legumes, vegetables and whole grains, you will be getting so much of the nutrients in AXA1125 that it's hard to imagine this supplement making any difference at all. No doubt a healthy vegetarian diet would do the job too. Sure, not every person with ME/CFS will be eating well, but enough of us have eaten well, at least at times, to know that diet and/or amino acid supplements aren't a cure.
It doesn't sound as though the researchers are controlling for diet. There's no mention of them even asking about diet or requiring diet to be kept constant. When you are investigating a supplement that is a lot like food, I would think it would be important.
And, it's not as if there is something magic in the ratios of the individual components either.
"Animal and plant foods that contain complete proteins or all amino acids include: Red meat. Chicken..."
In 100 g of chicken meat (various sources) [in the AXA1125 stick pack]
Leucine 2.00 g vs 1.00 g in AXA1125
Isoleucine 0.375 g vs 0.5g. (1.5g in 100g of beef).
Valine 1.66 g vs 0.5g
Arginine 2.00 g vs 1.81 g
Glutamine 5.00 g vs 2.00 g
NAC is a precursor to cysteine. Cysteine 0.336 g NAC 0.15 g
Basically, if you eat a small serve of animal protein each day and the rest of your diet has dairy food, legumes, vegetables and whole grains, you will be getting so much of the nutrients in AXA1125 that it's hard to imagine this supplement making any difference at all. No doubt a healthy vegetarian diet would do the job too. Sure, not every person with ME/CFS will be eating well, but enough of us have eaten well, at least at times, to know that diet and/or amino acid supplements aren't a cure.
It doesn't sound as though the researchers are controlling for diet. There's no mention of them even asking about diet or requiring diet to be kept constant. When you are investigating a supplement that is a lot like food, I would think it would be important.
And, it's not as if there is something magic in the ratios of the individual components either.
Different department, probably with no knowledge of Michael Sharpe's involvement in PACE etc.
I think it's probably more a case of the company that manufactures the product looking for an academic/medical department to conduct a trial.
I had forgotten what a tiny trial this is, only 40 people, half on placebo.
i do not hold hope that this trial will make any difference. But we all know that research money is being thrown at Long Covid.
Wonko
Senior Member (Voting Rights)
Is it tho?
It looks to I like research money is being thrown at what 'they' have decided long covid is, in exactly the same way as research money was spent on what 'they' decided ME was - rather than on what patients are experiencing.
So we have all the same 'research' as was used to waste resources with ME, exactly the same 'research' in many cases, as produced nothing useful for us.
But they are spending money, so want a pat on the back, and acclaim, for doing so - despite this.
It's as if medicine only has one way of doing things, even when it;s been shown over decades that this approach doesn't work for post viral conditions, so are just going in circles, looping, trying and retrying the same damn stuff, no matter the evidence that it isn't fruitful.
Exactly the same mindset as led to CBT/GET - 'we' have no other approach therefore what 'we' have is fantastic, it not working and being harmful (wasting scarce funding in this case) is irrelevant, it's what 'we' have and therefore is the 'best' available approach.
It really is quite vexing.
It looks to I like research money is being thrown at what 'they' have decided long covid is, in exactly the same way as research money was spent on what 'they' decided ME was - rather than on what patients are experiencing.
So we have all the same 'research' as was used to waste resources with ME, exactly the same 'research' in many cases, as produced nothing useful for us.
But they are spending money, so want a pat on the back, and acclaim, for doing so - despite this.
It's as if medicine only has one way of doing things, even when it;s been shown over decades that this approach doesn't work for post viral conditions, so are just going in circles, looping, trying and retrying the same damn stuff, no matter the evidence that it isn't fruitful.
Exactly the same mindset as led to CBT/GET - 'we' have no other approach therefore what 'we' have is fantastic, it not working and being harmful (wasting scarce funding in this case) is irrelevant, it's what 'we' have and therefore is the 'best' available approach.
It really is quite vexing.
Neither do I. I had assumed this one was being funded by the drug company.
I agree lots of the long covid reseach money is wasted.
adambeyoncelowe
Senior Member (Voting Rights)
Rice and peas is also a complete protein, which is why it is such a popular food in the Caribbean (and why there are variations on this in countries all over the world).
So serve yourself some jerk chicken and rice and peas, and you'll be cured!
A good rice and peas recipe is as follows:
Ingredients
For jerk seasoning, ASDA has Cape Herb & Spice Rub in jerk flavour. It's quite mild and is easy to just sprinkle on top, as it comes in a metal shaker.
Tropical Sun and Dunn's River have pastes that are great, but are a lot hotter (even for me, who is used to them). The chicken comes out really moist with those but don't leave them to marinate as they will only get stronger. (You can always add the other half of the coconut milk to the chicken, though.)
Ingredients
- 800g kidney beans or black-eyed peas (two cans)
- 200ml coconut milk (half a can)
- 500ml chicken stock
- 200g basmati rice (a cup)
- 1tbsp thyme
- 2 cloves garlic
- 1tsp allspice (ground pimento)
- Optional: 1 chopped spring onion
- Optional: 1 small chopped pepper
- Heat the thyme in the bottom of your pan for a few seconds, until it releases its fragrance. Do not burn.
- Add the other ingredients to the pan and bring to the boil.
- Cover and simmer until the water has been partially absorbed, but so that you can still see some water bubbling beneath the surface of the rice.
- Turn off the heat and keep covered for 20-30 minutes while the rice absorbs the last of the water.
- Serve when ready.
For jerk seasoning, ASDA has Cape Herb & Spice Rub in jerk flavour. It's quite mild and is easy to just sprinkle on top, as it comes in a metal shaker.
Tropical Sun and Dunn's River have pastes that are great, but are a lot hotter (even for me, who is used to them). The chicken comes out really moist with those but don't leave them to marinate as they will only get stronger. (You can always add the other half of the coconut milk to the chicken, though.)
There. That's my homemade Caribbean cure for ME and long COVID!
Discussion of the Rice and peas recipe has been moved to the Forum Kitchen
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I had a lecturer when I took my advanced genetics course who was very interested in the regulatory potential of long non coding RNA.
Sadly pretty common
It's "too much of a burden" on both researchers and participants...
Andy
Retired committee member
"While hacking the mitochondrial genome could change healthcare in years to come, finding more immediate ways of improving mitochondrial health could help the millions of people with long Covid and chronic fatigue syndrome, also known as ME/CFS.
At Oxford University, cardiologist Betty Raman is currently in the middle of running a clinical trial to see whether an amino acid cocktail known as AXA1125, produced by Massachusetts-based biotech Axcella Therapeutics, can help long Covid patients where fatigue is by far the dominant symptom.
“The drug is a powdered drink, consumed three times a day along with meals, and we’re hoping that it will help people with their energy levels and fatigue,” she says. “The idea is that it can give the mitochondria additional fuel to produce energy, and help repair damaged mitochondria. Hopefully, by the end of July, we should have some top line results to report.”
The idea that mitochondria may be involved in the ailments of some of those with long Covid arises from research conducted by Raman and others on patients who find themselves chronically exhausted by exercise following Covid-19, despite showing no obvious heart or lung abnormalities. This symptom is often referred to as post-exertional malaise (PEM), and is also experienced by people with genetic mitochondrial diseases."
https://www.theguardian.com/science/2022/jun/26/can-our-mitochondria-help-to-beat-long-covid
At Oxford University, cardiologist Betty Raman is currently in the middle of running a clinical trial to see whether an amino acid cocktail known as AXA1125, produced by Massachusetts-based biotech Axcella Therapeutics, can help long Covid patients where fatigue is by far the dominant symptom.
“The drug is a powdered drink, consumed three times a day along with meals, and we’re hoping that it will help people with their energy levels and fatigue,” she says. “The idea is that it can give the mitochondria additional fuel to produce energy, and help repair damaged mitochondria. Hopefully, by the end of July, we should have some top line results to report.”
The idea that mitochondria may be involved in the ailments of some of those with long Covid arises from research conducted by Raman and others on patients who find themselves chronically exhausted by exercise following Covid-19, despite showing no obvious heart or lung abnormalities. This symptom is often referred to as post-exertional malaise (PEM), and is also experienced by people with genetic mitochondrial diseases."
https://www.theguardian.com/science/2022/jun/26/can-our-mitochondria-help-to-beat-long-covid
For clarification— Axcella is a different company than Astellas https://www.astellas.com/en/ — the Japanese company funding Systrom’s study. Meds from both companies target mitochondria.
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I do not believe there is proven physical mitochondria damage. Anyone heard otherwise?
Possibly some evidence of changes in mitochondrial energy/fuel usage but even if this is true it surely looks like a downstream effect rather than primary cause.
Chris Armstrong's work (2015) indicated a change in mitochondrial "fuel" usage - glucose high (less utilisation) and some amino acids low (increased utilisation). Fluge & Mella potentially found evidence of PDH not functioning [cytric acid cycle - mitochondrial energy cycle?] i.e. amino acids which don't go through PDH were low and amino acids which do were elevated. Ron Davis's recent grant on manganese seems to be linked to this i.e. changes in energy production [related to manganese?] and downstream effect of increasing utilisation of amino acids for energy production.
Agreed, and those are metabolic differences but no physical damage showing in electron microscopy.
Not exactly, they found that pwME had an increase in PDK's, which are enzymes that add methyl groups to PDH and inactivates it. So PDH is actually working as it should, but the regulatory mechanism is out of whack. The question is why this happens.
PDH is mainly used to get pyruvate from glycolysis/carbohydrate breakdown into the Kreb's cycle and further into oxidative phosphorylation* to create energy and generally the body will rather use carbohydrates or fat for energy instead of amino acids. What the downstream effects are of utilising more amino acids for energy since the other two sources are not functioning well is an interesting question. Signs of hypometabolism has been seen, but pwME are not dying as can be seen with other metabolic disorders when something is not working. I simply don't understand how researchers are not wondering how it is possible to have such severe impairments as some with ME do and still live for years and years...
*I know it's the electrons we are interested in, trying to keep it simple.
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