Stem Cell Therapy

[IreneF]

I understand this money perspective. My GP says the same thing. Whenever I bring up a treatment he always asks me how much it is going to cost.

Money becomes so immaterial when you're sick. Obviously you want to spend it wisely, but I think I speak for most people here when I say that I would rather waste money than not try anything at all. I've spent a lot on different treatments over the years and 95% haven't given any obvious benefit. I don't regret any of it.

Having said that, spending tens of thousands on one treatment doesn't seem like a good gamble. I would rather spread the odds across a number of cheaper treatments that have good evidence of efficacy from other diseases.

I need to have a good idea of how something works before I pay for it. I'm fairly cautious.

 

[Justin30]

@trickthefox just wondering if you have improved from the stem cell treatment?

I hope you are feeling some positive affects and that you to willrecover as did your friends.

 

[trickthefox]

Yep, certainly, there are a few other factors at play, im also rifing, using low dose naltrexone and using rifaximin for my gut, but I am going to the gym for the first time in 2 years.

I was what you call severe M.E., as on and off for years the most I was getting up daily was to go to the toilet, or possibly to the living room, so its a pretty big turn around

 

[Justin30]

@trickthefox thats pretty incredible.

Did you suffer from POTS, and other neurological issues or was it more just like sleep problems, fatigue, PEM, Pain?

 

[trickthefox]

I suffered, and still suffer (but not anywhere near as bad) with neuro issues - brain fog, taste deprivation, light/noise sensitivity, phsycosis, anxiety, visual snow, vocal ticks, stutters, loss of co-ordination, stutters, erratic behaviour, obsessive behavior... etc. etc. im a phsychologists wet dream.

I also have leg pain, foot pain, and huuuuuge food sensitivities. Most my neuro issues now are linked to my food sensitivities.

Then big fatigue, which is improving

 

[Justin30]

I suffered, and still suffer (but not anywhere near as bad) with neuro issues - brain fog, taste deprivation, light/noise sensitivity, phsycosis, anxiety, visual snow, vocal ticks, stutters, loss of co-ordination, stutters, erratic behaviour, obsessive behavior... etc. etc. im a phsychologists wet dream.

I also have leg pain, foot pain, and huuuuuge food sensitivities. Most my neuro issues now are linked to my food sensitivities.

Then big fatigue, which is improving

Did you ever have twitches, jerks, wired but tired, feeling like you were going to have a siezure or POTS that has improved?

Im really happy for you man im glad that the fatigue has improved thats awesome news.

Hope the train keeps moving forward.

 

[Biarritz13]

Dear trickthefox,
I understand your enthusiasm for this but you have not yet given me a single example of reasonable published evidence. Lots and lots of evidence is no use if one does not see the quality - there is always lots of talk about trendy speculative ideas. Review journals are weighed down by articles about the wonders of stem cells because that is how people justify grants. But there is no such thing as 'a stem cell'. There are various populations of cells that have the potential to differentiate into blood cells or other cell types but I have yet to see much value in taking just of 'stem cells'.

I strictly have no idea if stem cells can help ME or not but yesterday I saw an interview of two well known professors that tried stem cells therapy (taken from the belly fat) on a patient who had scleroderma and is cured now.

It's not bullshit, it's not a private clinic, the patient didn't pay anything, it was made in a respectable and well known french hospital.

The professor said something that sound like they are trying on every possible pathology.

 

[Justin30]

I strictly have no idea if stem cells can help ME or not but yesterday I saw an interview of two well known professors that tried stem cells therapy (taken from the belly fat) on a patient who had scleroderma and is cured now.

It's not bullshit, it's not a private clinic, the patient didn't pay anything, it was made in a respectable and well known french hospital.

The professor said something that sound like they are trying on every possible pathology.

Can you share the interview or article that would be great if possible.

Thanks

Justin

 

[Biarritz13]

I tried to but I didn't find the link yet at it was on TV.

I'll check the replay in a few days but the video will include the whole program (tv news) and not only the interview.

 

[Biarritz13]

Wait, I found this :

http://sclerodermanews.com/2016/02/...at-the-4th-systemic-sclerosis-world-congress/

In a presentation titled “Treating Scleroderma of the Face and Hands with Fat and Stromal Vascular Fraction,” Professor Guy Magalon from the Assistance Publique des Hôpitaux de Marseille (APHM) will present and discuss data regarding a two-year follow-up of 12 patients with hand dysfunction associated with scleroderma and treated with Cytori Cell Therapy in the pilot study SCLERADEC-I.

 

[Jonathan Edwards]

I strictly have no idea if stem cells can help ME or not but yesterday I saw an interview of two well known professors that tried stem cells therapy (taken from the belly fat) on a patient who had scleroderma and is cured now.

It's not bullshit, it's not a private clinic, the patient didn't pay anything, it was made in a respectable and well known french hospital.

The professor said something that sound like they are trying on every possible pathology.

Judging from the publications this is not in any meaningful sense stem cell therapy. The injections contain cells from fat tissue intended to restore quality of skin. Presumably the idea is that these cells make new fat or maybe blood vessels, although there seems nothing to suggest the latter happens. Unfortunately all the studies are uncontrolled and uncontrolled studies in scleroderma tend not to pan out. It is very hard to see how there can be any real benefit in the long term since the key problem is death of arterioles and capillaries - which as far as we know cannot regenerate in the presence of scleroderma.

I don't think this really has any implications for ME!!

 

[dannybex]

Stem cell treatments were a disaster when Cheney advocated them in 2010 or so. I'm aware of one guy (a former member here) who is still bedridden as a result of the treatments.

 

[Justin30]

Stem cell treatments were a disaster when Cheney advocated them in 2010 or so. I'm aware of one guy (a former member here) who is still bedridden as a result of the treatments.

Wow didnt realize that they could have such a disastrous effect. I thought they worked then stopped from what I read.

Thats quite serious....i have also heard of people that experienced improvement for a long time others that it helped then stopped working.

 

[sorin]

I hate to see people waste thousands of dollars on pseudoscience.

Sorry, but what "the real science" proved that can do for CFS patients? Almost nothing?!?

 

[Jonathan Edwards]

Sorry, but what "the real science" proved that can do for CFS patients? Almost nothing?!?

Nothing, indeed but at least if money goes to something that actually makes sense it might one day help. I see no point in pouring money into the pockets of people who offer stuff that sounds as if it makes sense but does not.

 

[Snow Leopard]

I've seen someone waste many thousands of money on dubious "stem cell therapy".

 

[Cristy]

The doctor sounds as if he saw amazing increases in his bank account from randomly taking bits of people and putting them back. It is just not credible that stomach fat stuck in a knee would have an effect on Parkinson's. after all the cells were already there in the stomach fat so why should it make any difference putting them a bit further away from the brain in a knee where they will die. Why would anyone put it down to that. Maybe the patient had adjusted his medication.

Sorry folks, but stem cell therapy does not exist.

I found this interesting though?
http://sacfs.asn.au/download/CFS+and+Stem+Cells+final.pdf

 

[barbc56]

Cheney sent patients to an illegal clinic and made money from referring them. This was highly unethical. Is he still doing this? Is it even legal?

 

[wastwater]

Story of interest.New era of 'cut and paste' humans close as man injected with genetically-edited blood http://www.telegraph.co.uk/science/...aste-humans-close-as-man-injected-with-genet/

 

[Santino]

@Jonathan Edwards I am totally objective. I am interested in that topic. I find that you exaggerate in a negative way as you say that what stem cell clinics offer makes no sense. It does make sense since there are various animal models and in vitro studies at first that showed various immune modulatory effects of e.g. mesenchymal stem cells. The same line of pre clinical research is used for any modern medication I know of. They all run through these lines of studies and then often mechanisms are found why something might work. In the end we still often don't fully understand how things work as we only can bring parts of the mechanism to light. E.g. psychopharmacological treatments for long time have been thought to work due to their impact on neurotransmitters. We still find new and new working mechanisms of drugs that are in use for more than 10 years now. So, I find you line of argumentation is inconsequent unless you recommend to everyone to just lay in bed and try out nothing because nothing ever makes sense to try.

Then, I think you did not even take 15-30 minutes to take a look to search trough some of the studies. Since you are obviously educated in that area, why don't you help the people here and instead of talking hopes down do so at least in the way that you ask the others to formulate hopes, which is in an evidence based way. I took some time to read through published studies and injecting certain types of stem cells intraveniously certainly is not senseless as you claim it would be. There have been RCTs for crohn's disease and MS with promising results and it turns out there is still a lot we do not understand. If you wait for studies using this approach for ME... Some people don't want or can wait until everything is done in multilple RCTs and even that would not mean that they would also benefit (in case RCT showed that).

On top of that, as in all areas where money is involved: You cannot trust all people and maybe even only a minority. There certainly are many dubious clinics out there but there are also serious doctors trying to help patients with stem cell based approach.

So, if I would have to position myself in the discussion here, i would see myself in between your opinion and some statements made by others...Everybody should be very sceptical but saying it is nonsense is pretty big nonsense....