Drug Would You Take an Experimental Drug For ME/CFS and/or FM?

[Marya]

Here's the situation. It's an experimental drug. Early reports are very promising - it could be a legitimate breakthrough, but the drug also has potentially significant side effects - a dark side. You're give the opportunity to test it out - for free. You trust the doctor providing it but he/she emphasizes that nobody really knows what will happen. It could produce a breakthrough or breakdown or do nothing. What do you do?

Hi Cort,
First,thanks for all your work getting out info to us all.
I'm an American living near Bergen Norway. I have had M.E. since Nov 2005,but was first diagnosed Dec 2009, just before I suffered a major relapse. (and progressively worse health, so that I am now almost totally house and bedbound). I was lucky enough to be accepted for the Rituximab open lable trial 2010-2014, but had no positive effect.I've been bugging Dr Fluge since, and have been a lab-rat for several preliminary experiments. I am now included in the cyclophosphamid trial (part of the large Ritximab trial going on). It took a bit of thinking before I said yes to the cyclo., as it has a lot more side effects than Rituximab, (some of them potentially harmful), but the drs monitor us verey closely. There is not only no ameliorating treatment here, but the restrictions on importing even vitamins into this country are so stringent, that I see no potential hope of getting better without being accepted for a trial. So I am an exampleof your quote above, and right now enduring part of the "dark side" - side effects that make me even sicker and more debilitated, but hoping for a better future.

 

[Cort]

Hi Cort,
First,thanks for all your work getting out info to us all.
I'm an American living near Bergen Norway. I have had M.E. since Nov 2005,but was first diagnosed Dec 2009, just before I suffered a major relapse. (and progressively worse health, so that I am now almost totally house and bedbound). I was lucky enough to be accepted for the Rituximab open lable trial 2010-2014, but had no positive effect.I've been bugging Dr Fluge since, and have been a lab-rat for several preliminary experiments. I am now included in the cyclophosphamid trial (part of the large Ritximab trial going on). It took a bit of thinking before I said yes to the cyclo., as it has a lot more side effects than Rituximab, (some of them potentially harmful), but the drs monitor us verey closely. There is not only no ameliorating treatment here, but the restrictions on importing even vitamins into this country are so stringent, that I see no potential hope of getting better without being accepted for a trial. So I am an exampleof your quote above, and right now enduring part of the "dark side" - side effects that make me even sicker and more debilitated, but hoping for a better future.

Sending good wishes your way Marya that your body will adapt to the drug the side effects will diminish and you'll start seeing some positive results.
Good luck!

 

[loki]

i just think it will be hard for a pharmaceutical to treat a disease that has multiple different causes. for example, i heared about CFS after chemotherapy, i heared about CFS caused by high viral titers, i heared about CFS in MS... i heared it can outbreak after a long viral infection that finally clears... so, when the causes are multiple, the targets (for the drug molecule) will be different, there has to be the ONE cause for ALL CFS cases. i'm not that much deep into the topic like you all and i could be wrong, but could it be that CFS / ME with FM is in 100% caused by 1 specific thing? because if not so, there will never be a drug that covers all CFS/ME cases, or am I completely wrong?!

and @ marya: i don't want to give you any advice but wouldn't it be careful to try out some high doses of steroids first and then move on to Cyclophosphamide? like, CP is really really nasty stuff and can damage your body way more than you might think in the first moment, forever! I went through chemotherapy (for a virus, without cyclophosphamide) but i know, the people who make these trials will not stay at your house for the next 20 years and hold your hand when you get infertile or worse from the Cyclophosphamide. I'm not into this stuff alot, so see my warning not as absolute advice, see it as like: I will take X risk for Y health profit. and ask yourself if you have tried enough things before Cyclophosphamide ( i mean, it kills off so many cells!)

 

[Issie]

i just think it will be hard for a pharmaceutical to treat a disease that has multiple different causes. for example, i heared about CFS after chemotherapy, i heared about CFS caused by high viral titers, i heared about CFS in MS... i heared it can outbreak after a long viral infection that finally clears... so, when the causes are multiple, the targets (for the drug molecule) will be different, there has to be the ONE cause for ALL CFS cases. i'm not that much deep into the topic like you all and i could be wrong, but could it be that CFS / ME with FM is in 100% caused by 1 specific thing? because if not so, there will never be a drug that covers all CFS/ME cases, or am I completely wrong?!)

Yes, that's how I see it.

Issie

 

[IrisRV]

for example, i heared about CFS after chemotherapy, i heared about CFS caused by high viral titers, i heared about CFS in MS...

I think some of those are chronic fatigue, the symptom, rather than Chronic Fatigue Syndrome, the neuroimmune illness.

I don't think one treatment will work for all types of chronic fatigue, the symptom. Most are only minimally associated with our illness.

It might be possible that tightly defined ME will eventually have a single treatment. However, there is likely to be more than one illness under the heading CFS if looser definitions are used. I'll be glad to see biomarkers that distinguish those subsets from each other. That might make it possible to find single treatments for subsets because we could have a clearer picture about what's a the root of the different illnesses.

 

[Steve]

Wow, a post here. I’m not a CBD expert but I have science background and I’ve tried it for fibro pain...drinking tons of it, mixing it with THC, massage, you name it. It’s allowed have .3% THC in it, which I am apparently sensitive to and I get a little fuzzy, no problem. The problem is it did nothing for my pain. I’m not familiar with that brand. I don’t know any cbd data for depression but for a few days trial, it’s no big deal, harmless, and worth a try imo. There are potential minor side effects and I do consider it a drug but I would say any health risk is extremely minimal short term and probably long term. Adding oil to a hot meal...well there are cookbooks for mj and probably cbd so I doubt it breaks down at that temperature level. If I thought it might help I’d certainly try it. Good luck.

 

[Cort]

Wow, a post here. I’m not a CBD expert but I have science background and I’ve tried it for fibro pain...drinking tons of it, mixing it with THC, massage, you name it. It’s allowed have .3% THC in it, which I am apparently sensitive to and I get a little fuzzy, no problem. The problem is it did nothing for my pain. I’m not familiar with that brand. I don’t know any cbd data for depression but for a few days trial, it’s no big deal, harmless, and worth a try imo. There are potential minor side effects and I do consider it a drug but I would say any health risk is extremely minimal short term and probably long term. Adding oil to a hot meal...well there are cookbooks for mj and probably cbd so I doubt it breaks down at that temperature level. If I thought it might help I’d certainly try it. Good luck.

I agree - definitely worth a try. Start out low - it could really help.