Infographics archive?

[JD_Lucas]

Is there an archive for infographics relating to M.E?


I would like to get involved in advocacy and I have graphic design experience. I’m interested in creating infographics which concisely summarise various aspects of M.E. (research, lack of funding, lack of awareness etc.) which can be shared on social media. I’m specifically talking about graphics that represent data and statistics (see examples below) as opposed to art work or cartoons. For instance showing how M.E. is at bottom of pile for funding by comparing money spent per person for other illnesses. Other examples could be clarifying and simplifying data produced from studies by Davis, Naviaux et al.


After a brief search through PR, Twitter and the #MEAction website I couldn’t find much. Surely there’s plenty of statistics, numbers and info that can be summarised into easy-to-understand graphics, or am I mistaken?



Thanks


JD

 

[*GG*]

Is this just going to be a UK thing?

GG

 

[JD_Lucas]

Worldwide; anything related to ME. Ideally they would be distributed through a central channel like #MEAction to maximise the reach. If there isn’t an archive then it would be a good idea to create one as a place to quickly grab and share, particularly during events like #MillionsMissing.

I helped design and coordinate a campaign on social media regarding the WCA and ATOS (in the UK) during 2013 and managed to reach 200,000 views in the space of a month, so would like to bring that experience to M.E. advocacy. We found summarising info from reputable sources into easily digestible graphics was a great way of gaining credibility and support.

Attached images are just examples to clarify type of Infographics I'm talking about.

 

[Hajnalka]

Your plan sounds awesome @JD_Lucas! And welcome to Phoenix Rising.

Edit: I guess your idea to contact MEAction would be a good start.

 

[JD_Lucas]

Attached below is a design I've come up within the last couple of days. Below that are 2 examples of infographic designs that can be modified for ME info and statistics. I've also set up a Twitter account to archive the images: twitter.com/ME_infographics


So now the task is to find more relevant information and statistics. For instance the #MEAction website had some good general statistics for the USA like the following:


- Number of people with ME: 1 to 2.5 million


- At least 25% of ME/CFS patients are home- or bed-bound


- costs to economy: $17- $24 billion annually in lost productivity and direct medical costs.


- The Dimmock, Mirin & Jason comparison of funding for diseases with similar burden and prevalence


- Less than 12 clinics treat the millions of patients nationwide.



So if anybody can point me in the direction of some workable statistics that would be great! Thanks



JD

 

[JD_Lucas]

Evidence showing the physiological nature of the illness is also crucial in spreading awareness to counteract psychosomatic claims.

For instance data like this:

https://twitter.com/i/web/status/750638212213800961

So yet again, if you've got any suggestions for studies that can be summarised into Infographics please let me know.

 

[Murph]

I'm a big fan of graphics - it's how I absobr informtion best - but I lack the aesthetic sense to make ones that really pop.

So I love this idea and am well aware that a few good infographics can spread well on social media and be really powerful.

Here you can find the data behind Naviaux's 2016 metabolomics study. http://metabolomicsworkbench.org/data/DRCCMetadata.php?Mode=Study&StudyID=ST000450

If you have any questions about the data just ask, but it shows big differences in ceramides, purines and sphingolipids which might be able to be summarised down to something simple. Here's a graph I made from data in that dataset. I know for sure you could make this a million times more expressive!

I also think you might be able to show the potential of rituximab using this data from the last Fluge and MElla Rituximab study. Simply plotting the numbers in the last column would really show something.

There's also the study that just came out about the miRNA levels after exercise. You can get their raw data here.

https://www.nature.com/articles/s41598-017-15383-9#Sec17

The data is a bit mixed. Depends on whether you're willing to wade thru and do analysis too!

 

[JD_Lucas]

Thanks @Murph. I think I'm currently drafting up something for the 2016 Naviaux study. This is the link I used: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5027464/

I delved into the numbers and simplified it to the graphic below. I don't know if you drew out the same information but a second pair of eyes would be useful confirmation.

 

[Murph]

That's a nice graphic!!

I can't see the source for those exact numbers tho? When I look in table 2 and table 3 I find slightly higher numbers of abnormal pathways.

 

[JD_Lucas]

I came to those averages in a rather convoluted way, however after a second look at the data these two graphs (Fig S2A and S2B, from the appendix if I recall correctly) show a Mean Total of 40 for CFS across both sexes and likewise a Mean Total of 16 for the controls.

I don't understand what Mean Low represents. Is it a conservative calculation for the mean?

 

[Murph]

@JD_Lucas mean low refers to metabolites that were measured as being below the average for the group. (some metabolites came out high.

So on that graphic the average ccfspatient has 40 metabolites out of whack, 25 low, 15 high.

for the sake of a bigger relative difference plotting 25 low in patients vs 9 low in controls might give a more impressive graphic? Heading: metabolite shortfalls. It'd be justified because naviaux used the metabolite shortfalls to infer hypometabolism.

 

[JD_Lucas]

Thanks for clarifying @Murph. I can make 2 or 3 images over the coming weeks to show different aspects of the data. Obviously for this study it's about showing the empirical difference between ME/CFS and healthy controls. The graphic is nearly complete so it can easily be modified to suit whichever comparison that needs to be represented.

 

[Murph]

Nice one JD. Can I make a sugestion about the funding pile graphic above? I reckon a differnt template coudl be good. The left margin of the bar graph is obvisouly not meant to be part of the bars but the way it is coloured it looks like part of the bars. It means the total area occupied by the red line is not especially tiny and the effect is diminished. As you know people judge by looking at relative areas and the red area looks to be a third as much as MS, not a tenth

 

[JD_Lucas]

Yes, the funding graphic was a compromise. If I'd created the chart to scale then ME/CFS funding would barely be visible as its so small compared to the others. Thanks for the suggestion - making a graphic that shows the true scale between funding is an idea I want to play with in the future

 

[Hajnalka]

Hi, just brainstorming.

On the mepedia site for exercise are some interesting graphs: http://me-pedia.org/wiki/Exercise

The PACE trial is a goldmine for shocking numbers. Also the diagnostic criteria (e.g. CCC, ICC) could be shown as graphics (to make visible that it's not about fatigue).

 

[Murph]

If I'd created the chart to scale then ME/CFS funding would barely be visible as its so small compared to the others.

I think this would be evocative

 

[JD_Lucas]

Thanks @Joh, your link is exactly the kind of thing I'm looking for.

I have the PACE trial on my to-do list – as you say, I'm sure there's lots of important information that can be extracted.

In my experience the literature on ME/CFS can be confusing and daunting, however there's no doubt it can be simplified. Hopefully, health permitting, this is something I can work on as a continuing project and help spread awareness.

Thanks again to @Murph and yourself for helping me!

 

[JD_Lucas]

@Murph - I just had a play with the exact scale for the funding comparison. Here is what it looks like....ME/CFS is a tiny red dot in the middle, which may not be visible on your screen.

 

[JD_Lucas]

I'm now looking for the next idea for an infographic.

If you have some concise data/information to share then please let me know.

My initial thoughts are creating a graphic summarising information from either...

- Criticisms of the PACE trial

...or....

- Patients with ME score more poorly on quality of life surveys than patients with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers. Source: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

 

[JD_Lucas]

Would anyone like to help manage the ME infographics Twitter and Facebook accounts, as well as posting updates to forums?

I’d rather put my limited energy solely towards designing. If you’re interested let me know - it can be a group project so there can be more than 2 of us.