Frontiers in Medicine is interested in doing a special edition on "ME/CFS -The Severely Affected" if there is sufficient interest

https://twitter.com/user/status/1116516289277829125

 

I hope that there is enough interest to make this viable.
However this is a world dominated by the absence of care, research , healthcare provision etc, which might make it harder re knowledge base, interest etc.

Fingers crossed that it pans out. Highlighting lack of knowledge and provision may pique the interest of future researchers and provide some much needed publicity for those who endure life.

 

It is worth remembering that this sort of call for papers for a themed edition is a way of making money for the journal. Papers submitted for this sort of thing tend to involve a $2000 publication charge to the author. And the quality of the mix is very dependent on the chosen volume editor.

Good quality studies will not get submitted to this because the authors will choose a journal when they have their manuscript ready. Themed editions like this tend to attract the stuff that for whatever reason people find hard to publish in standard form. That is often wrapped up in review material designed to raise the profile of the authors' pet theories.

 

OTOH, is there scope here for raising the profile of how severe this condition can get? Frontiers in Medicine rings a bell - they're reasonably high-profile, aren't they? I wonder if this special issue could prod some researchers to collate what data they've got on severely ill patients and produce papers that they wouldn't have done otherwise.

I take your point that the best stuff (such as OMF's Big Data, Severely Ill study) isn't likely to end up in this, but still...

 

They work very hard to be high profile but 'Frontiers' has debased its currency to the extent of being worthless with these invitations for themed volumes. I get requests on a daily basis for papers for journals like this and realised long ago I would have to pay thousands of dollars for the privilege.

And you need the right person to be doing the editing role.

 

That may all be true, but for this particular subject, this may be the right format.

I think the severely ill ME/CFS patients are quite extraordinary. Anyone who has seen them or cared for them will immediately understand that chronic fatigue syndrome is not the right term for this condition. And that it does not represent the end of the spectrum of what ordinary, healthy persons experience as fatigue.

There are also some common features of the severely affected such as being so exhausted that you can no longer eat or talk, or having extreme noise and sound sensitivity, that might convince doctors and researchers that this a disorder worth researching. That there must be common pathophysiology for why these patients are suffering these symptoms. My guess is that the severely ill represent a clinical picture that is quite unique (you don't normally see it in other diseases) and that most stories of ME/CFS patients who get severely ill are quite similar. There seems to more homogeneity in the subgroup of severely ill patients than in the whole ME/CFS patient population.

So I would very much like this information to be highlighted in the scientific literature. This might have been hard to do because you can only describe severe ME/CFS - it's hard to do research on them because patients are so ill and rare. If this call would result in some clinicians/researchers describing what they have seen - the clinical picture of severe ME/CFS - that would be an important step forward.

 

I agree

 

Sounds perfect for KDM.

 

Seems the group has previously published a fair amount of ME related papers.

The controversies section of the Wikipedia page is an interesting read.