What's it like to be involved in the Cloudy study?

Hi everyone, this is Louise, the project manager for the Cloudy with a Chance of Pain study. Would anybody like to leave some comments on how they found being involved in the study? Has it been helpful at all? Have you enjoyed being a part of groundbreaking research? And have any of you looked at all the study data on our citizen science website and tried to spot any connections between weather and pain? cloudywithachanceofpain.com...

I would love to hear your thoughts. Comment down below or email [e-mail].

Many thanks!

Louise

[brown9]

It has been interesting I haven't really looked at the study data it didn't give much info

I just hope the data is useful for the study. It might be interesting to see data of people with the same illness rather than across all conditions

[weathervane in reply to brown9]

I agree , it would be great if data could be divided ip like that. I have tried to enter data everyday and i can see connection with pain and changes in air pressure and leading to mood changes.

[Hidden in reply to weathervane]

Hi weathervane , thanks for replying and sharing your thoughts. Is it any change in air pressure that triggers your pain, rather than it being high or low pressure? I like your username, by the way, very apt!

[weathervane in reply to Hidden]

I think it is the actual change in weather particularly when it starts to get hot, my hands and feet start to ache. I also get a sore head when there is thunder about

[Hidden in reply to weathervane]

Hi there. You're certainly not the only person to report changes in weather as a trigger, and heads appear to be quite sensitive to storms brewing (ask our migraine sufferers...).

I would love to hear more - would you be willing to share your story, and thoughts on how the weather influences your symptoms? If so, please email me at [e-mail]. I'm sure our newsletter readers would like to hear more.

Thanks

Louise

[Hidden in reply to brown9]

Thanks brown9 . Have you tried exploring the data on the citizen science page of our website? Go to: cloudywithachanceofpain.com... and be sure to log in (top right hand side of the screen). You will be able to see your symptom data against weather data and compare with a sample of other participants' data. This may give you more insight than looking at your data reports on the app.

While we're not able to select different diagnoses on the website or app, our research team will definitely be analysing this and publishing the results around summer time in 2017.

[Mummab]

I have had chronic pain following a lifting injury for over 30 years and never felt that there was a correlation between weather and pain for me. However I dont doubt that this does not apply for everyone. And my record seem to bear this out that there is no correlation

I wonder if conditions like fibromyalgia are more inclined to have symptoms correlate with atmospheric pressure. Perhaps its autoimmune conditions whereas I seem to 'just' have osteoarthritis. It will be really interesting to be able to see the report when its published to see what the conclusion is.

Will we be able to access the report without having to pay if it is published in a peer reviewed publication??

[Hidden in reply to Mummab]

Hi Mummab and thanks for getting in touch (and taking part in the study).

That's an interesting hypotheses - let's see whether our analysis of the data supports this theory. And yes, of course we will share all our findings/reports with our study participants, free of charge, it's the least we can do after you've spent time recording your symptoms.

Thanks again.

[sianr]

I was involved in the study from the start , I forgot my password and it has locked me out ever since , I've left messages on FB which I eventually received a reply with little help on how to retrieve my account to continue the study which I find beneficial , can you please help?

[Hidden in reply to sianr]

Hi sianr , I'm very sorry to hear this.

Is it the app you are having trouble signing in to? If so send an email to our partners at uMotif who will be able to assist you with retrieving your account - [e-mail] - They are very good at getting back to participants quickly.

Any other problems do let me know.

Rebecca

[e-mail]

[1701A]

Hi Louise

It has helped my in noticing how quick my condition deteriorates when the weather changes. I've always been able to tell when it is going to rain ..creaky knees! This weather is a magic bullet for me not pain at all. I recently completed an Expert Patients Programme and it was interesting that other attendees with various chronic conditions experienced the same problems with weather changes.