TAKE SURVEY -- What should the NIH study in ME/CFS? They're asking you!

[TigerLilea]

The section I wasn't happy with is the "non-pathogenic triggers". What do chemotherapy or pregnancy, for instance, have to do with CFS/ME? Yes, fatigue is a well known symptom of both, but neither has anything to do with CFS. Why would you even consider that these be included in CFS research??

 

[JaimeS]

The section I wasn't happy with is the "non-pathogenic triggers". What do chemotherapy or pregnancy, for instance, have to do with CFS/ME? Yes, fatigue is a well known symptom of both, but neither has anything to do with CFS. Why would you even consider that these be included in CFS research??

Definitely not in the original post -- placed there because ppl thought there was too much emphasis on pathogens. All the CC comments are along the lines of 'why is X included', but everyone has their own idea of what is most important. Show you don't think it's important by rating it low.

@Kati , I did because it wasn't showing up on the 'new posts' page for people who search there. However, I primarily did because @Sushi asked me to, and I tend to do as the mods ask!

-J

 

[JaimeS]

What do chemotherapy or pregnancy, for instance, have to do with CFS/ME?

To be specific, people have developed ME/CFS after chemotherapy. Not just fatigue -- ME. Same for pregnancy. It's not about the symptoms of fatigue that are experienced at the time.

-J

 

[Sushi]

@Kati , I did because it wasn't showing up on the 'new posts' page for people who search there. However, I primarily did because @Sushi asked me to, and I tend to do as the mods ask!

I actually meant a post in the original thread--that would have brought the link up in New Posts for everyone. But let's figure out how to make the two thread distinct. How about changing the title of this thread a bit so that the two threads aren't confused--Something like New Link to Survey--NIH is asking you!

 

[Kati]

Definitely not in the original post -- placed there because ppl thought there was too much emphasis on pathogens. All the CC comments are along the lines of 'why is X included', but everyone has their own idea of what is most important. Show you don't think it's important by rating it low.

@Kati , I did because it wasn't showing up on the 'new posts' page for people who search there. However, I primarily did because @Sushi asked me to, and I tend to do as the mods ask!

-J

Thank you for your reply.

This NIH request for information is in my eyes extremely important, and it is crucial that we get things right. A request for alternative treatments such as colostrum and other 'soft supplements' risk to send the disease straight to the institute of complimentary medicine. We need to be extremely careful in our responses and our requests.

 

[TigerLilea]

Thank you for your reply.

This NIH request for information is in my eyes extremely important, and it is crucial that we get things right. A request for alternative treatments such as colostrum and other 'soft supplements' risk to send the disease straight to the institute of complimentary medicine. We need to be extremely careful in our responses and our requests.

I totally agree, Kati. Complimentary medicine should not be a part of this study. I want real research done with some real answers at the end.

 

[Old Bones]

I also agree with @Kati and @TigerLilea that alternative treatments/complementary medicine (especially supplements) should not be included in the NIH study. This gives the impression that ME is not a real and serious illness. In the absence of treatments within the mainstream medical system, many (most?) of us have tried countless supplements, diets and other interventions over many years in an attempt to improve our health. I know I have. If this approach were the answer, we'd be well by now.

 

[Groggy Doggy]

@Kati
There is a write in section so you can add your opinion. Also, you can firmly disagree on each question. I read the survey a few times and feel comforable with my answers. I used the write in feature for a couple of questions too. I don't have a 'follow the herd' outlook when it comes to how we should approach ME research and treatment; I thought the form was flexible enough to accomodate my needs. Has it been revised since you looked at it?

 

[Mel9]

@Kati
There is a write in section so you can add your opinion. Also, you can firmly disagree on each question. I read the survey a few times and feel comforable with my answers. I used the write in feature for a couple of questions too. I don't have a 'follow the herd' outlook when it comes to how we should approach ME research and treatment; I thought the form was flexible enough to accomodate my needs. Has it been revised since you looked at it?

The survey seemed good
One suggestion
Re theCriteria question, it would be good to include a short summary for each alternative

 

[A.B.]

Thank you for your reply.

This NIH request for information is in my eyes extremely important, and it is crucial that we get things right. A request for alternative treatments such as colostrum and other 'soft supplements' risk to send the disease straight to the institute of complimentary medicine. We need to be extremely careful in our responses and our requests.

Which is where Walitt works. Just to give an idea of what kind of people work there. Asking for research into supplements is like looking down the barrel of a rifle while it's loaded.

I think odd supplement could turn out to be somewhat helpful but we need a real research program that investigates the disease so that we understand what is happening and can come up with treatments that target the disease mechanism, and that won't include supplements.

So research into supplements is a luxury we can't afford and political mistake at this point. The priority is clearly elsewhere.

 

[JaimeS]

There has been research on Vitamin C for cancer patients and CoQ-10 for inherited mitochondrial disorders. No one thinks these aren't 'serious illnesses' because there are OTC medications or supplements that can be helpful in addressing them. OTC supplementation studies and recommendations doesn't appear to have affected how serious people believe other conditions to be. I think our main issue lies elsewhere, with poor medical education and poor funding, not with the suggestion that ME -- like other illnesses -- can be affected by cheaper, easier to access medication.

Moreover, there is nothing special about OTC vs prescription medication in terms of what works best for patients -- it's an artificial division created by numerous factors and is only peripherally-related to the med's strength. I understand that a lot of people feel that if something a doctor didn't hand you made you feel better, you must not have been very sick, but this is an absolute fallacy.

I understand it's a widely-held one, though, and that it affects public perception if it shows we improved with a med we could get without resorting to a physician's help. But don't we all know, here on PR, that people DO improve without physicians' help, using OTC methods? I know there are some out there who have tried a wide variety of things and experienced no improvement, but the vast majority of us have found some supplement that has improved QOL. Do we want all patients to have to go through that ridiculous, laborious process of trying to determine what OTC meds help them when research can point physicians and patients to what is most likely to, if not cure patients, then help improve their lives? Something relatively cheap, and readily accessible?

I want research that helps patients figure out what to do to improve their QOL, and I find it immaterial whether the meds come from a doctor's hand or a shelf at the store. In many ways, I'd rather they came off the shelf, because so few physicians understand ME (and that won't change instantaneously), and because OTC meds are cheaper and don't depend on what insurance you do or don't have this week.

I'm concerned with the potential of a med to help patients and less with how it may look to others if we benefit from it.

Finally, Ron Davis's findings -- which most people are wild about, the survey says -- would support supplementation with OTC meds such as biotin, CoQ-10, and tryptophan to nudge the metabolic errors that have resulted (probably) from infectious damage to the mitochondria. Just because something is OTC doesn't mean it has no effect or should be dismissed.

If you don't believe OTC supplements can help people, or are worthy of research, it is easy to make your answers reflect that.

Speaking as an individual, of course, not as #MEAction.

 

[JaimeS]

Also, if there is something you don't want people to study, vote it down rather than saying it shouldn't be there.

As the questions on CBT and GET show, this survey isn't only about what we DO want to look at, but what we consider unimportant or useless or hazardous!

-J

 

[sarah darwins]

All done. I didn't find the survey contentious at all. And any time I didn't quite like a question, there was space to explain why.

Well done, Jaime, and all concerned. Thank you.

 

[Old Bones]

There has been research on Vitamin C for cancer patients . . . No one thinks these aren't 'serious illnesses' because there are OTC medications or supplements that can be helpful in addressing them. OTC supplementation studies and recommendations doesn't appear to have affected how serious people believe other conditions to be.

I acknowledge the point you are making, but . . . cancer, for example, is already recognized as a real and serious illness. It has biomarkers, proven diagnostic tests, and has captured the attention and concern of the mainstream medical system, and society. ME does not, and has not. Until the controversy surrounding ME is put to rest, and the illness is firmly established as real and biological in the minds of the majority, our community needs to be careful not to do anything that perpetuates the existing unfortunate narrative.

Do we want all patients to have to go through that ridiculous, laborious process of trying to determine what OTC meds help them when research can point physicians and patients to what is most likely to, if not cure patients, then help improve their lives?

Of course we don't. But shouldn't the first step be to determine what has gone wrong? Only then will research be able to point physicians and patients in the right direction. To do otherwise is more like "trial and error". Regardless, we don't exactly have people lining up to fund research into ME. And until we do, it seems our limited resources should be more narrowly focused.

 

[JaimeS]

And until we do, it seems our limited resources should be more narrowly focused

I absolutely understand your reasoning and your POV!

However, I still don't think things should be removed from the survey, or shouldn't have been included in the first place. People's answers will speak for them, and everyone should be able to state their opinion.

 

[Old Bones]

However, I still don't think things should be removed from the survey, or shouldn't have been included in the first place. People's answers will speak for them, and everyone should be able to state their opinion.

I agree. Too many surveys, based on the questions asked, appear to have been designed to achieve the desired answers. Yours didn't, and covered "all bases" -- good job. I had no issues with responding to it. However, I did rate supplements as being of lesser importance in the NIH study.

 

[Kati]

There has been research on Vitamin C for cancer patients

Sorry Jamie, you are speaking to a chemo nurse. The evidence for vitamin C for cancer is rated as 'C' grade (unclear or conflicting scientific evidence)
Taken from this ressource: http://3rdparty.naturalstandard.com/connect/consumer/vitaminc.asp?back=true
http://3rdparty.naturalstandard.com/index-herbs.asp

 

[JaimeS]

Not interested in debating OTC medicines case-by-case... we'd be here quite awhile.

In any case, the point is not about any one, particular medication.

-J

 

[msf]

I thought it was a really well-crafted survey, to the point where I had to stop myself writing something under ´additional suggestions´ just for the hell of it.

 

[Kati]

Not interested in debating OTC medicines case-by-case... we'd be here quite awhile.

In any case, the point is not about any one, particular medication.

-J

Of course you're not, but you gave that particular example from the get go and I went look for the real evidence. I am all for evidence and evidence-based treatment not case-by-case success stories. NIH is in the capacity to fund research for us and I maintain that us the patients need to ask for the right things.

Usually it goes like this: preliminary evidence-> research-> double blind clinical trial with enough people in it to make it statistically significant.

I am not sure if people want to spend some more time assessing B-12 vs placebo (actually I believe it is currently being done at OMI) or taking a look at Rituximab. It sounds like we will find out. I believe we the patients with ME are worthy for big league drug trials.

Best, Kati