A masterlist of ME facts & the citations that support them

We have a bunch of facts we use both for advocacy and for scientific research that we cite often. I spend a good amount of time at #MEAction providing citations to other advocates, and I know that advocates spend hours... and hours... and hours searching for the right citation to support a fact they know they've "heard somewhere".

I think it would be a great boon to the community to create a list of the most important facts we use often, along with their citations -- first being certain that the data really does originate there and hasn't been cited mistakenly in a long, unbroken line. Which happens a lot.

Given the ridiculous number of these, and how long this thread could potentially become, I'm going to suggest that we work in a Google doc and I'm going to make big categories so that similar facts end up in about the same place.

I'm all for MEpedia being a living document, but usually only after the bare minimum has been formulated offline. Once we get a skeleton going, I'll create a page on MEpedia so that people can add additional things as they find them.

A general note:
Please don't just paste facts & their citations here -- add your suggestions to the doc.

This thread is for conversation about how best to collate or categorize these facts, or to ask for help finding a fact you think is important but cannot locate.

This could be a really useful project, and I thank anyone in advance who can participate.

 

Our first question is: what should the categories of facts be?

We might start with a category called 'core' or 'essential' facts. Facts that are needed often.

I'm thinking a category is epidemiology (prevalence, how many get sick, how many stay sick, diagnostic criteria facts, etc). As weird as this sounds -- because it's not a subject area -- we might even have a section just for numerical data. I think people are often looking for some fact to do with percentages or prevalence figures, and they'll want a category 'like that'.

Then we have bias as a category? E.g. the question about who said it's bad for patients to be in support groups.

Then we might go into subject area like neurology, GI, endocrine, infectious disease (including stuff about specific infectious organisms)? Have a section that's all divided by body system.

Then things that relate to effect on society like poverty and housing and such? Like that figure about how much we lose in money each year as a country due to ME.

Historical facts?

Let me know what you think, I'm sure I'm leaving a great deal out!

 

OK I've uploaded those categories into a Google doc. Anyone can edit it. @Hip I'll bet you have quite a few for the pile!

https://docs.google.com/document/d/1okX0o62pWabIX8lG-Qdg_jXwq8roIhaKLytFRhdRjho/edit?usp=sharing

If you make significant edits, I'm going to suggest that you:

1) Go to 'File'.
2) Go down to 'Version History'.
3) And Name Current Version.

This makes it easy to see what has been added to the doc and ensures there are plenty of save-points to return to if something goes wrong.

*cough, cough*

 

I think this is a great idea, i had thought about something after the Montreal conference but didn't do much about it beyond that. There is a journal of CFS that shut down some years ago and it seems current research is published in many different places.
One thing that is worth bearing in mind is that the many psychosomatic studies should probably have disclaimers or be put in a discredited resource category.

 

There is a 'Bias' category.

It does seem you're having to ask for permission to edit the doc. Don't worry guys, I'm giving everyone permission who asks.

 

Good to know

Request sent

 

Enormous fact repositories ahoy!

Here is the RFI I wrote in 2016.

I burnt myself to a tiny cinder to write it and looking back, I was very naive. It's a tome. Poor Benjamin had to somehow reduce it to something readable in a serious time crunch. For my part, I extracted the stuff that was to do with #MEAction's survey and sent the revised version as an individual. It's got a LOT of the facts we need.

If you do decide to start extracting them from this document, whenever you stop, post on this thread what page you were on so that someone else can take it up for a bit without redoing your work.

I suppose I should also say that although I have edited a few references here and there, I haven't touched it much since 2016, and I might not make the same recommendations or present the same ideas today.

 

On the science side, there's the OMF summary as well. The same goes for that one. If you put a fact there and have to stop (it, too, is a long doc) please say where you stopped in this thread so that others can continue.

https://www.omf.ngo/wp-content/uploads/2018/04/Literature-Search-by-Jaime-S.-2017.pdf

 

Sorry to super-post, but wondering:

What do ppl think of a table with three columns?

Fact Citation(s) Context

?

Gotta take a break guys, back this evening.

 

I also wanted to point out the existence of this page: https://www.me-pedia.org/wiki/List_...atigue_syndrome_and_myalgic_encephalomyelitis which links from the pathophysiology section on this page: https://www.me-pedia.org/wiki/Myalgic_encephalomyelitis

We should try to figure out how the master list of facts is different/similar to the list of abnormal findings. The list of findings page is parsimonious but extensive: great for finding citations and other MEpedia pages, but probably less good for people trying to incorporate cut-and-paste-ready, essential information into fact sheets. (It will probably eventually have hundreds if not thousands of citations.)

I think the masterlist should *not* be comprehensive, but rather should be *core.* What are the basic, workhorse facts advocates need to keep using over and over again?

 

Crucially it has to be searchable, ideally with the search terms being refinable, and able to do multi-pass searches. Often trying to find such info means homing in on what you are trying to find, only realising other things you can try as you get closer.

 

Might be better as a database that could be queried, with user interface that makes it look like you are just querying a document? But would be much more powerful?

 

Possibly but for now we are using the wiki format. However, if it's set up in a Table as Jaime recommended, then that could always become a searchable database.

OR we can set this up as a public Google spreadsheet rather than a Wiki page. However, the wiki format is really great for adding and formatting citations.

Also, I also think a lot of times, people don't know *what* they are searching for, so an easily scannable page could be really helpful. Tables can be sorted on MEpedia. And this page can also be organized into separate tables.

 

That is so very true, not just in the context of ME. Sometimes it can be pretty specific, other times just trying to help formulate an idea at the back of your mind.

 

I think to a reasonable approximation the two do not overlap.

The facts about ME are the clinical picture, the epidemiology, and a lot of consistently repeatable normal findings.

None of the abnormal findings are facts in the sense that they are known to be reliably representative of ME. Some of the physiological findings like vascular volumes and exercise testing may be representative but it is unclear to me what we should make of them.

The main fact for me is that we still have no good way of explaining the symptoms and so research is needed to find out more.

 

I would focus this googledoc more on facts, figures and quotes that can be used for advocacy purposes and leave the listing of biomedical abnormalities to MEpedia.

 

Wow that's an epic write-up!

 

I don't think I've seen funding figures mentioned as a category - ie the lack of funding.

 

Like I said, a bit over the top.

 

So i am a bit confused then, you already have a detailed document about ME/CFS, at most it might need an update?