Realistically there is no cure?

[Kyla]

This relaxing day retreat will awaken your feminine wisdom and your body’s natural ability to heal.

Obviously we've all got wandering wombs here, so the "women's retreat" thing isn't going to be a problem - I've no doubt that, even if there were such a thing as a male "Chronic Fatigue" sufferer (which of course I couldn't possibly be)...

Maybe your uterus has just wandered so far that you can't find it?

But seriously. An ME support group sent this to you?!? Not cool.

 

[minkeygirl]

When people get cancer, and go through treatment and into remission, they are not considered cured until they are 5 years out. So even if someone finds a "cure" for us, it would be wise to use that model and wait to see how people fare that far out.

At this point, I'd be happy for anything (ampligen or rat poo) relieve my symptoms.

 

[SOC]

But seriously. An ME support group sent this to you?!? Not cool.

I'm guessing this "ME support group" is not in the US, Canada, or Australia. Probably the UK which, sadly for our UK cohort, is still living in the ME dark ages.

Which is not to say there still isn't plenty of stigma in these other countries, but I doubt something calling itself an ME support group would get away with that kind of crap for long.

 

[Marco]

If I remember correctly GWI researcher Beatrice Golomb was interested in the effects of organophosphates etc on microtubules and how this effects mitochondrial energy production (in neurons). I happened to mention a thread on PR where counterintuitively, some people seemed to improve while (co-incidentally) using a vermicide drug which should work by interfering with microtubule function but perhaps in low doses may have the opposite effect (sorry I can't recall the details at the mo).

Sorry for the further diversion but I wanted to jot this down before I forgot it (again). Maybe a seperate thread would be useful if there's any mileage in it. I'll keep it brief.

Certain vermicide/anti-helminthic drugs work by destabilising microtubules which as discussed above are essential cellular components. In veterinary and human therapeutic doses they destabilise microtubules in the parasites but not in the host. All good.

But, these drugs (specifically those of the benzimidazole group) also have an additional effect. They are agonists of the mitochondrial master regulator PPAR-gamma/PGC1-a.

http://www.sciencedirect.com/science/article/pii/S0960894X11008717

Derivitives of these (and other compounds) are actively being trialled in type II diabetes and to improve microglial phagocytosis of amyloid- beta plaques in Alzheimer's.

http://www.jneurosci.org/content/32/48/17321.full.pdf

 

[Violeta]

Well that may be on its way

I can think of 3 drugs that may revolutionize treatment

1) Rituximab - already in trial
2) Brincidofovir - More effective, safer and broader spectrum than the current antivirals. Expected to be available within 1-2 years from what I've heard. The support for this drug has come from the huge demand for a antiviral for transplant recipients so the demand is there to get this drug available asap.

3) DRACO - This if it is approved for use in human clinical trials could be the equivalent of penicillin for viruses and completely revolutionize how viral infections are treated. It's a broad spectrum antiviral that works by specifically targeting viral infected cells and inducing apoptosis. If persistent viral infections can be identified as a cause of CFS/ME than a targeted therapy such as this may well be the equivalent of a miracle cure. Still some years off but I think now that we have prestigious researchers and institutes researching CFS/ME we have a good chance of trialling these drugs for us once more r&d work has been done.

How could a drug such as rituximab be a cure when it kills part of your immune system. Wouldn't that be like winning a battle but setting you up to lose the war? That would simply be temporarily removing a symptom or two. If it does even do that?

And interesting that the third on the list, DRACO is supposed to target viral infections. If viruses live inside our cells, which is why our immune system has a hard time tackling them, I wonder what DRACO would do, attack our cells?

If anyone thinks DRACO might be a solution, that would mean that they think a virus or two is the problem. So are you doing anything NOW to deal with viruses? There are so many things you can do without taking drugs with dangerous side effects.

 

[Marky90]

How could a drug such as rituximab be a cure when it kills part of your immune system. Wouldn't that be like winning a battle but setting you up to lose the war? That would simply be temporarily removing a symptom or two. If it does even do that?

Rituximab doesnt help for just headache or sore throat, it alleviates significantly ALL symptoms in the responders.

It would be nice if people actually read at least the abstract of these studies, before assuming. No offense intended.

 

[anciendaze]

The immune system is more like a football league than a single team, and some players are at odds with others. If this were a police force you might be talking about blue-on-blue violence. Even those performing purely protective roles may be a problem, as in suppressor T-cells protecting tumors.

Rituximab depletes a specific class of immune cells, CD20+ B-cells. Some of these seem to be defective in ME/CFS. One possible explanation of the difference in response in the first three years after onset is that depleting defective cells which are then replaced by undamaged cells from bone marrow restores desired function. If cells in bone marrow are damaged all bets are off.

 

[jimells]

Obviously we've all got wandering wombs here, so the "women's retreat" thing isn't going to be a problem

Are you sure you don't have a wandering womb? OK, no doctor can find it, but that's because it's wandering around, not because you don't have one!

 

[Violeta]

Rituximab doesnt help for just headache or sore throat, it alleviates significantly ALL symptoms in the responders.

It would be nice if people actually read at least the abstract of these studies, before assuming. No offense intended.

I read the side effects and how it works.

 

[alex3619]

Does anyone recall the details about the 2/3 of Rituximab study patients who are responders?

The final paper on this is due out in PLOSone any day. Stay tuned.

 

[Violeta]

The immune system is more like a football league than a single team, and some players are at odds with others. If this were a police force you might be talking about blue-on-blue violence. Even those performing purely protective roles may be a problem, as in suppressor T-cells protecting tumors.

Rituximab depletes a specific class of immune cells, CD20+ B-cells. Some of these seem to be defective in ME/CFS. One possible explanation of the difference in response in the first three years after onset is that depleting defective cells which are then replaced by undamaged cells from bone marrow restores desired function. If cells in bone marrow are damaged all bets are off.

And here's a list of the side effects. http://www.rxlist.com/rituxan-side-effects-drug-center.htm

ituxan (rituximab) is a cancer medication used in combination with other cancer medicines to treat non-Hodgkin's lymphoma. Rituxan is also used in combination with another drug called methotrexate to treat symptoms of adult rheumatoid arthritis. Common side effects of Rituxan include headache, fever, chills, stomach pain, nausea, diarrhea, heartburn, flushing, night sweats, weakness, muscle or joint pain, back pain, or dizziness.

 

[Scarecrow]

Common side effects of Rituxan include headache, fever, chills, stomach pain, nausea, diarrhea, heartburn, flushing, night sweats, weakness, muscle or joint pain, back pain, or dizziness

As someone else more or less said in another post (can't remember where or I would credit them), these are just some of the symptoms we have in a typical day.

 

[Marky90]

I read the side effects and how it works.

And here's a list of the side effects. http://www.rxlist.com/rituxan-side-effects-drug-center.htm

ituxan (rituximab) is a cancer medication used in combination with other cancer medicines to treat non-Hodgkin's lymphoma. Rituxan is also used in combination with another drug called methotrexate to treat symptoms of adult rheumatoid arthritis. Common side effects of Rituxan include headache, fever, chills, stomach pain, nausea, diarrhea, heartburn, flushing, night sweats, weakness, muscle or joint pain, back pain, or dizziness.

And the point is?

There is none.

 

[lansbergen]

I prefer (S)-6-Phenyl-2,3,5,6-tetrahydroimidazo[2,1-b][1,3]thiazole

Sorry for the further diversion but I wanted to jot this down before I forgot it (again). Maybe a seperate thread would be useful if there's any mileage in it. I'll keep it brief.

Certain vermicide/anti-helminthic drugs work by destabilising microtubules which as discussed above are essential cellular components. In veterinary and human therapeutic doses they destabilise microtubules in the parasites but not in the host. All good.

But, these drugs (specifically those of the benzimidazole group) also have an additional effect. They are agonists of the mitochondrial master regulator PPAR-gamma/PGC1-a.

http://www.sciencedirect.com/science/article/pii/S0960894X11008717

Derivitives of these (and other compounds) are actively being trialled in type II diabetes and to improve microglial phagocytosis of amyloid- beta plaques in Alzheimer's.

http://www.jneurosci.org/content/32/48/17321.full.pdf

 

[lansbergen]

I prefer (S)-6-Phenyl-2,3,5,6-tetrahydroimidazo[2,1-b][1,3]thiazole

ncbi.nlm.nih.gov/pubmed/699190
DL-2-Oxo-3-(2-mercaptoethyl)-5-phenylimidazolidine. A sulfhydryl metabolite of levamisole that interacts with microtubules.

 

[Violeta]

And the point is?

There is none.

If you want to truly get better, don't take rituximab, it's like Russian roulette.

 

[Violeta]

As someone else more or less said in another post (can't remember where or I would credit them), these are just some of the symptoms we have in a typical day.

Yes, I know, I have CFS/ME, I just don't want to add in an additional reason for getting them.

And why would I want to take something that causes the symptoms that I get on a typical day?

 

[Violeta]

More possible side effects of rituximab.

Adverse events[edit]
Serious adverse events, which can cause death and disability, include:[31]

• Severe infusion reaction.
• Cardiac arrest
• Cytokine release syndrome
• Tumor lysis syndrome, causing acute renal failure
• Infections
  • Hepatitis B reactivation
  • Other viral infections
  • Progressive multifocal leukoencephalopathy (PML)
• Immune toxicity, with depletion of B cells in 70% to 80% of lymphoma patients
• Pulmonary toxicity[32]
• Bowel obstruction and perforation[33]

Two patients with systemic lupus erythematosus died of progressive multifocal leukoencephalopathy (PML) after being treated with rituximab. PML is caused by activation of JC virus, a common virus in the brain which is usually latent. Reactivation of the JC virus usually results in death or severe brain damage.[34]

At least one patient with rheumatoid arthritis developed PML after treatment with rituximab.[35]

v

 

[Marky90]

If you want to truly get better, don't take rituximab, it's like Russian roulette.

Two thirds, disagrees. And they didnt suffer from any of the mentioned adverse reactions, because they are incredibly rare.

But by all means, suit yourselves
But you will stay sick.

 

[Marky90]

And why would I want to take something that causes the symptoms that I get on a typical day?

You dont immediatly get ALL the side effects, they are just side effects reported by patients. I doubt anyone had them all at the same time.