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Discussion about concerns that some dodgy treatments get promoted by patients to patients.

JAM

Jill
Messages
421
I totally agree that there is so much more science needed in the area of vitamins-nutritional science. For me the issue isn't the simple binary of either take them or don't but what and at what dosage do we need to take various vits.I take loads but i don't know why and there is a possibility- very real- that some of what i take is doing me some degree of harm For eg. there's a synergistic interaction between vits- take more of one you may cause a negative effect with the other- (i think magnesium and calcium are like this- ). As ever more research is needed but i fear that this area will never get the funding it deserves - it isn't cancer, Alzheimers etc. and therefore afforded low/no priority. that was the thing i didn't get about J. E's comment- seemed like a scientist saying there was no real need for science of this area- ?!!!
Most of the examples you give could be solved by seeing a ND. The research is out there for more than most people think.
The dosage issue is frustrating, but it isn't like the drugs have exact dosages either. Most docs have to guess within a large range and adjust as needed. It isn't much different with herbs and supplements.
 

JAM

Jill
Messages
421
Personally, I don't think there are really good reasons to take vitamins and supplements outside of a specific need. Much better to eat healthy food! I also think there are factors in real food that we can't replace with pills.
Yes, yes, YES! :)
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Supplements have a grading system but I'm not sure how good it is. Most, if not all bottles, will say the name of the regulating agency used.

Fwiw, I never realized until this thread how most people don't use the disclaimers, like imho or dr so and so said or ? that I was taught back in 2005.

Imho, it's funny that the programmer analyst read and followed the guidelines. How logical ! Lol.

Tc .. x
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I just looked at my supplement bottles and I don't see this anymore. Yikes.

If you want to learn more about this you could google good manufacturing practice or gmp certified. Or how are supplements graded ?

Tc .. x
 

JAM

Jill
Messages
421
I just looked at my supplement bottles and I don't see this anymore. Yikes.

If you want to learn more about this you could google good manufacturing practice or gmp certified. Or how are supplements graded ?

Tc .. x
We do have to be careful and research the manufacturers, but I feel more safe with the manufactures I have chosen than I would with the pharmaceutical companies and FDA. If only the FDA wasn't run by the pharmaceutical companies... It isn't right that we can't trust our regulatory agencies. If we could I wouldn't mind them regulating supplements as drugs instead of food, but the fact is we can't trust them so I prefer the system we have and the responsibility to our health that comes with it. I put my trust in independent certification.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I just looked at my supplement bottles and I don't see this anymore. Yikes.

If you want to learn more about this you could google good manufacturing practice or gmp certified. Or how are supplements graded ?

Tc .. x

Maybe it depends on the country of manufacture. What do you mean by 'grading', @xchocoholic?

One of my UK-made supplements doesn't have anything that I could describe as grading. One of my US ones carries a 'GMP' logo and says it hasn't been evaluated by the FDA.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Grading is complicated. Imho, the website How stuff works has a good blurb on it tho. Far better than I could do.

I'm confused on who's actually doing the grading. As in are the supplement companies paying an organization to grade their products ? That's ok I guess but can we really trust this ?

If you google gmp graded supplements you'll find a list.

Gotta rest. Tc .. x
 

JAM

Jill
Messages
421
I'm confused on who's actually doing the grading. As in are the supplement companies paying an organization to grade their products ? That's ok I guess but can we really trust this ?
I trust it more than I do the FDA, but I also tour facilitates and call and talk to the herbalists on staff where my products are made. There is a lot more transparency than in the pharma industry.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco

xchocoholic

Senior Member
Messages
2,947
Location
Florida

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Here in the US, we're being bombarded with drug advertisements and told to go ask our doctors for them. If you google drug tv advertisement you'll see articles on this. Sometimes the disclaimers in these ads are longer than the promotional part. Lol. Some of them are hysterical.

I remember seeing those disclaimers. You'd see ads for antidepressants then the disclaimer tells you it increases suicide risk...
 

Gingergrrl

Senior Member
Messages
16,171
There was one TV ad in the US (I now forget which medication) that the announcer spoke really fast for the side effects disclaimer. He said that the med could cause "coma or death" but both my best friend and I thought he said "Comb-over death" (meaning when a man who is balding on top- like my dad- creates a comb-over to look like he has more hair LOL.) We literally could not figure out for months what the announcer was saying until we saw the ad in print in a magazine. It still makes me laugh now.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I think there is a problem with patients not being listened to. Patients have a unique perspective steming from their actual experience of this disease, and any treatments.

Why do I have a very strong view about GET? Because I have tried it. It made me significantly worse and there is no doubt it was GET that caused that damage. Having experienced that, I then researched it and found that actually there isn't any good evidence for it being effective, and there is evidence that it can cause damage, as it did to me.

I then thought, why didnt the therapist warn me of the risks? Reviewing all that is claimed about GET, I concluded it was because the therapist simply had bought into it, and really believed it would work and would be good, and that any claims of negative reactions must just be the lies told by some patients who are anti GET for some obscure reason that no-one understands.
I see this as a problem.

I've also had CBT, but I was fortunate that the psycologist was brand new to ME and I told her I only wanted a few sessions to help me come to terms with being so seriously ill. I am not anti-CBT by the way, my parents are both therapists, my mother runs a family therapy team under the NHS and my father trains social workers and is an expert witness in court cases regarding child protection. They also both offer private therapy and use CBT.
But they say themselves that the idea of CBT working for ME is just plain stupid.

So patients like me are actually objective, it's just that we're right and have experience that doctors who aren't sick with this disease will never have. And we're sick of people saying we're wrong.

From the patient's perspective, havign ME is just as obvious and the same as if we had Ebola but were being told GET and CBT will sort it. It's just plain wrong. Obviously wrong. And while that's happening proper work to figure out what's wrong is supressed. It is an incredibly frustrating place to be. And so you do see patients being quite vocal about GET and CBT being crap, but it is because we are right and we ought to be listened to.

Do patients over-support biological models and interventions?
Perhaps, but I think that happens more with patients who havent had it so long. Patients learn fast.

I tried methylation first when I came here and at first seemed to get a small boost from it, but basically I concluded it was just over stimulating things and then wore off. I expect a well person might have got the same bonus for a time. So you learn from trying and you learn from studying, and a lot of us study hard.

From my point of view there is also a tactical element.
Because there is little biological research in ME/CFS and there are much easier diseases to work on, more rewarding for sure, this means firstly that its important to support researchers who do research even if they arent maybe looking in the right place.

Researchers learn too, and later they might persue a more promising avenue. Also, you can't be certain where the answer will lay, the cause of ME could surprise us one day.

Second, a lot of the research is just pilot stuff because of lack of funding and so you get small sample sizes, which doesn't result in a big finding, may be no finding at all, or may be something important. You can't know. But its really important to support this work because it could be the start of something.

So personally I praise such work more than it perhaps deserves, I am optimistic about it, because I think that is likely to help push things forward quicker and get us where we want to be, all the time stating what we need next, which is lots of good ideas being explored with well designed studies, with good sample sizes and so on.

Treatments based on such early research though is risky and probably not a good idea, but it is every individuals choice which I suggest they should make after researching as much as possible.

Edit: one last thing to add is that although methylation wasn't the answer for me, it apparently works for some and who would I be to dismiss it entirely. Maybe it does work for a subgroup of patients. Everything is somewhat open until good research can narrow things down and rule other things out.

I totally agree with this. Thanks. X
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I was looking at this again because in a couple of threads I've seen PR referred to as a reliable source of information to the outside world. Fyi, finding these and providing links isn't going to happen. Lol. (Eta I just remembered seeing this in the mum in prison thread.)

I can see how some people here are above and beyond the level of medical training that most people have but does this make PR a reliable source ? (I'm clearly in the dummy category here. Lol )

How is reliable source defined in the medical field ?

Aren't we still dealing with opposing medical opinions in some, most ?, cases of me/cfs ?

What I'm asking is what do we and/or the educated really know for sure about me/cfs ? The importance of sub categories, OI, Pem, ? ... Is the internet / PR ? responsible for this info ?

Inquiring minds want to know. ☺

Tx .. x
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
I was looking at this again because in a couple of threads I've seen PR referred to as a reliable source of information to the outside world. Fyi, finding these and providing links isn't going to happen. ;)

I can see how some people here are above and beyond the level of medical training that most people have but does this make PR a reliable source ? (I'm clearly in the dummy category here. Lol )

But aren't we still dealing with opposing medical opinions in some cases ? What I'm asking is what do we and/or the educated really know for sure ?

Inquiring minds want to know. ☺

@xchocoholic I put myself in the dummy category as well re: medicine and science so I try to compensate for that by reading a variety of opinions (PR, Google, other medical websites, etc) and consulting with other patients with similar medical issues, and talking to my doctors (the ones I trust.) Then I make the best decision that I can with the info I have, always knowing that there is risk that the treatment could not work or even make me worse.

I did none of this when I blindly took Levaquin in 2010 which caused me mitochondrial damage, a systemic neurotoxic reaction and damaged the tendon in my arm. I blindly trusted my then ENT and took the free samples he gave me. I did not Google the med for side effects or look on patient forums (until it was too late.) Had I even filled the med at a pharmacy and read the printed info (vs. getting samples) I would not have taken it. I did not know about the three FDA black box warnings, the lawsuits, etc.

So for me, PR is an amazing source of info and I get to talk with people with much more medical background than myself. By the time I decided to try Famvir, I had researched it extensively and probably spoken to at least 20 patients who had tried it and read the entire guide that Hip created. I found people who did not improve from it, but I did not find anyone who had been harmed or injured by it. So when I compared Famvir to Valcyte (in my own case), I knew I was not comfortable with Valcyte but I was comfortable with Famvir. Even if I take the full six mos and it does not help me, I will never regret having tried it.

As far as methylation, I did have some major problems with it but I knew they might occur and I viewed it as something I was trying at my own risk. I knew to have Niacin on hand to counter a bad reaction and I have learned from the experience. I tried again at a lower dose but it still did not work for me. I may try again some day with hydroxy B instead of methyl B or I may not.

For me, PR is empowering and a great place to compare info (but then you ultimately try something at your own risk.) People from PR send me links and info all the time on ideas to try and then I weigh the pros and cons. I don't think anyone should blindly try a treatment that they have not researched and not comfortable with on their own. Hope that helps.
 

JAM

Jill
Messages
421
How is reliable source defined in the medical field ?

Aren't we still dealing with opposing medical opinions in some, most ?, cases of me/cfs ?

What I'm asking is what do we and/or the educated really know for sure about me/cfs ? The importance of sub categories, OI, Pem, ? ... Is the internet / PR ? responsible for this info ?

Inquiring minds want to know. ☺

Tx .. x
In order:
Usually peer review is required, higher sample size, double-blind, etc.

Yes, definitely.

No. No. and No, but I for one was very happy to find a place where people discussed their experiences.

It boggles my mind that second hand information from a "researcher" who has no experience with a problem and only looking at a small section of the problem for a short time is a more reliable resource that a person living with a problem day in and day out. Only in academia/ medicine is that acceptable. Can you imagine a witness in a court of law trying to testify that way? Or a reporter? No one would take them seriously, but only people doing that are taken seriously in medicine, first hand experience is all "anecdotal" at best. Strange.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Yes. It is still in testing but early results follow the pattern I described above. That's what nerve apoptosis does, kill the infected nerves and let the remaining ones take over function. I can't list it here but I'm planning on opening up the treatment for pilot testing later.

Are you aware of the vagus nerve infection hypothesis, as discussed here? If you kill that one you could be in serious trouble - if not dead.
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
Are you aware of the vagus nerve infection hypothesis, as discussed here? If you kill that one you could be in serious trouble - if not dead.

Nothing ventured, nothing gained. Nerves are bundles of millions of cells. Apoptosis is the natural process for killing off infected cells. As long as some healthy nerves remain they can take over the function eventually. Also, you don't lose all the tissue instantaneously, it takes weeks so there is always time to stop.

I don't think the vagus nerve is the only nerve infected with CFS. I think it is caused by infection of many cranial and peripheral nerves as well as skin, muscle, ligament and tendons. That said, I wish the researcher luck in his work.