What has helped you the most - SURVEY (the first of many)

[Nuno]

Hey guys, I know this is pretty vague but this will the first of many surveys, me and some buddies will be doing in order to find the best treatments for us.

So, to keep it short, for our brain fogged fellows, this poll will help get some info from the ME community on which treatments have more success.

There will be more polls to come, but this one is very important and will give us an idea of which treatments to focus on. So please, everyone fill out this poll ONE TIME ONLY and enter your email address so that we can correlate treatment responses to the individual for future polls (this will be completely anonymous).

I've listed a whole bunch of treatments that you can check off (check as many that apply) and enter any treatments that benefitted you but are not listed at the bottom under "other". Please only fill out this poll if you actually have ME/CFS!

Lastly, please share this poll in all ME/CFS forums that you can so that we get the most responses possible. The more information, the better for all of us! Thank you so much for your cooperation and I will share the results shortly!

In the future we plan on focusing more into subsets (for instance... "what has helped you nerological?"... "which peptides have worked best?"... what has gave you a one level boost above baseline even upon medication cessation?").

Any suggestions are kindly appreciated ,
Together we will get our lives back.

Regards,
Nuno

 

[Judee]

What if we know we have ME/CFS but have never found a doctor to document an official diagnosis?

Everything with my disease fits the CCC criteria.
https://me-pedia.org/wiki/Canadian_Consensus_Criteria

 

[Nuno]

What if we know we have ME/CFS but have never found a doctor to document an official diagnosis?

Everything with my disease fits the CCC criteria.
https://me-pedia.org/wiki/Canadian_Consensus_Criteria

Thanks for asking that!

If your symptoms match most of ME... then you can pretty much fill the survey! I know how hard it can be for us to get a diagnosis of it so I guess we have to trust our intuition.

I mean, this is not for a super scientific paper but just to get a basic knowledge.

 

[Wishful]

and you had a viral onset...

How many people actually know absolutely for sure what triggered their ME? They may have felt virus-like symptoms and then never got better, but that doesn't prove that a virus was responsible. My initial symptoms felt 100% flu-like, except that they disappeared overnight, and later turned out to be type IV food sensitivity (t-cell activation). My hypothesis is that ME is commonly triggered by immune activation, and it doesn't really matter what the immune trigger was.

 

[Nuno]

How many people actually know absolutely for sure what triggered their ME? My hypothesis is that ME is commonly triggered by immune activation, and it doesn't really matter what the immune trigger was.

Hello Wishful, my goal here is not to discuss the theories of what causes ME since that is a whole other story. But yes you are right, not everyone can pinpoint their ME to a viral onset, tho some might have had it assymptomatic as we are now seeing with covid.

Anyways, it was a bold assumption from my part! A viral onset is not a requirement for having ME/CFS.. obviously. Proof of that is all the people that had it from other stressors like toxins, mold, chemicals etc.

 

[wabi-sabi]

(this will be completely anonymous).

How will you disidentify your data?

 

[Nuno]

How will you disidentify your data?

Not sure what you mean? We're not going to put the emails public, and its not like we have in interest in that either.

This is just a measure for preventing several answers from the same person

 

[wabi-sabi]

Dis-identifying data is a way of making things anonymous. Instead of the people doing the survey just promising not to tell personal details, you take all info that could identify people out of the survey data. It means that no one can match an email address with particular answers and a particular person.

There are lots of ways to dis-identify data and sometimes survey programs can even do it for you. I ask because I wouldn't want to be in a survey that didn't disidentify me. Others may not want to either. It's just a good way to protect the people that are helping you out by giving you info.

 

[wabi-sabi]

Here's a wikipedia explanation.
https://en.wikipedia.org/wiki/De-identification

 

[Nuno]

Here's a wikipedia explanation.
https://en.wikipedia.org/wiki/De-identification

Thank you for providing that info. Google docs forms in itself is not aligning the emails with the answers if that is what is worrying you, I can provide you proof for that if you want...

Anyways, I appreciate your insight mate, sometimes as a sick person with brain fog some minor details might not be as clear for me as it is for another

 

[vision blue]

Why not put the poll here? Some of us privacy fanatics will not use google docs, google forms, google surveys.

 

[Nuno]

Why not put the poll here? Some of us privacy fanatics will not use google docs, google forms, google surveys.

Data visualization and representation is one of the reasons... Since we started doing this on the Discord ME/CFS research server, and on reddit and twitter too, it is easier to put all together by using a universal place.

 

[vision blue]

Easier for who? You can always transfer the data. Anyway, doesnt matter if youre not after every single possible participant. I wo t, eg but perhaps im in the minority.

For those who dont know, google will collect your IP address and hang onto any info you provide , and add it to your google profile using your IP address and other identifying info- like your email address . Helps if you have a VPN Check googles privacy policy if you dont believe me. If you start getting targettee ads after you fill out the survey, youll know why.

 

[lint7]

I mentioned this to someone on Discord. This survey is much less valuable than it would be if you had a second question asking which of those treatments the person has tried.

That way you know if they tried a treatment and it didn't work. You also know how many people who tried a treatment had success.

Knowing that 10 people benefited from one treatment doesn't mean all that much on it's own, but if all 10 people who tried it benefited from it, that is valuable information. If 10 people benefited out of 100 who tried it, that is a totally different story.

 

[wabi-sabi]

Knowing that 10 people benefited from one treatment doesn't mean all that much on it's own, but if all 10 people who tried it benefited from it, that is valuable information. If 10 people benefited out of 100 who tried it, that is a totally different story.

Yes, we need to know about treatment failures too.

 

[YippeeKi YOW !!]

@Nuno

You might want to do a little search here on PR, since polls like this have cropped up repeatedly.

Some of them have excellent outside links to well-organized lists of everything that members of PR as well as patients from outside PR have tried, from prescription meds to supps to herbs to homeopathy to Tibetan Singing Bowls.

EDIT .... for typos and additional clarity

 

[YippeeKi YOW !!]

In the future we plan on focusing more into subsets (f

Who is this "WE" you've referenced.

I mean, this is not for a super scientific paper but just to get a basic knowledge.

Where else is this knowledge going to be posted, and what use outside of the Phoenix Rising site is it going to be put to?

This community is no stranger to being mined for information, and we all want to help, but we need to know where this mined knowledge is going, and whether we can maintain anonymity, since you're posting the survey link as a Google doc that requires personal information

 

[Learner1]

@Nuno The list of treatments on your survey is rather arbitrary and very drug-heavy. ME/CFS seems to consist of about 25 different problems with patients having various subsets of these. This simplistic approach is not likely to produce anything useful, unfortunately.

If you'd like to pursue this approach, maybe you'd find the crowd sourced list on Stuff that works to be more useful - their top 10 crowd sourced treatments are antidepressants, and include nothing that's worked for me.

 

[YippeeKi YOW !!]

Google docs forms in itself is not aligning the emails with the answers if that is what is worrying you, I can provide you proof for that if you want...

You're kidding, right !!!?!?!?!?!???

Google 'aligns' every breath we take, every PM we make, every drug we take. Every email we send, every text, every ad we so much as glance at, every on-line order, every search, everything we ask Siri or Alexa, the contents of our refrigerators and when we order milk, how frequently we take our cars in for maintenance, how often our baby cries during any 24 hr period.... you name it, they pretty much know it or want to know it or intend to find it out ...

 

[Nuno]

Guys my intention is to help everyone, if you dont want then dont do it, it is simple

I understand the frustation of being sick, I lost everything myself, but you're coming at the wrong guy.

I totally agree with both @lint7 and @Learner1, this one is just to get a basic knowledge maybe it was not the best but we're still learning! We will be going to dive deeper on the next ones, if you want send me message on MECFS discord as I am more active there

And no, google wont start selling you amisulpride just because you clicked amisulpride on the forms, it doesnt work like that.

The 'we' refers as me @Thebirdman333 and @pump

Again, I am just taking out of my own time to help out, I am not the enemy.

EDIT: if anyone wants to help or be part of this just shoot me a message!