What are the 'missing' research papers based on existing data that we wish scientists would write about ME/CFS?

strategist said:
I would like to see more post-mortem studies. They could greatly speed up progress.
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My brain read this as "postmodern studies" and went down a whole track of wondering what that might look like in biomedical ME/CFS research before another little voice in my head suggested it might be worth rereading the sentence. *sigh* Brainfog, thou art not my friend. Thank goodness for the little voices in my head! :laugh:
 
1. Review paper exploring mental health measures across different illness types (ME/CFS, MS, Lyme, etc.) and the general population. Just today I was looking for a paper showing that pwme do not experience mental health-related issues any more than the general population (not surprisingly the general population doesn't score too high on this, either). I went to three ME conferences this past year (IiME, Stanford Symposium, and Simmaron Patient Day) and recalled seeing figures/graphs from Hansen (and others?) showing no difference in mental health status between ME and general population. This is an important message to convey - we aren't crazy, or not any more so than people with other illnesses, other than those with depression that is!

This sent me on a bit of an odyssey in the literature - there is a smattering of papers that address this subject (i.e. http://www.jad-journal.com/article/0165-0327(96)00015-8/pdf, https://www.cdc.gov/mmwr/volumes/65/wr/mm655051a4.htm), but the literature was a bit thin, making me wonder if it is too premature for such a paper. Hansen's work will be an excellent data point to add. But then again, I have not done an exhaustive search.

The attached figure is one of Hansen's (with Hornig's head blocking the pertinent piece - mental health).

2. Familial inheritance patterns. Again, the literature is a bit thin, but there might be enough there. Certainly after OMF gets their inheritance study underway we might have some more data points.

3. re: Exercise/deconditioning: Of the many topics above, it seems like this one is ripe for the picking (well, after Hansen's group publishes their exercise data). There are bits and bobs across the literature - all it would take is for a small group of people to do a literature search and write it up. Ha, easily said, not done!

I think it would be fun for the sciencey and academic types here to develop a project (some serious grey matter in this group!). I used to do this sort of thing a lot in my former life - all it would take is a small group to pick a topic, select some search terms, apply them to different databases (Web of Science, Google Scholar, etc.) and see what comes up. These papers get divvied up an get screened using a data-collecting rubric. If only we had more brain cells and energy! Oh well :(
 

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I'd like to see a review paper that pulls together existing info to demonstrate that ME is a state where every system in the body is turned upside down: sleep/wake cycle, blood pressure, gut function, temperature regulation, cortisol production, energy production, response to exercise etc.

It's all there in different papers written by scientists with specific areas of interest - but with the exception perhaps of Naviaux's 2016 paper likening ME to the 'dauer' state in animals, I haven't seen the 'upside down' description comprehensively addressed and discussed in any kind of overview.

It's an easy concept for people to get their heads around, whether they're doctors or not. It could go a long way towards showing govts, medics and the general public what this disease really is about - and helping them understand that treatments which help other ppl may actually harm us.
 
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Since2010 said:
I'd like to see a review paper that pulls together existing info to demonstrate that ME is a state where every system in the body is turned upside down: sleep/wake cycle, blood pressure, gut function, temperature regulation, cortisol production, energy production, response to exercise etc.

It's all there in different papers written by scientists with specific areas of interest - but with the exception perhaps of Naviaux's 2016 paper likening ME to the 'dauer' state in animals, I haven't seen the 'upside down' description comprehensively addressed and discussed in any kind of overview.

It's an easy concept for people to get their heads around, whether they're doctors or not. It could go a long way towards showing govts, medics and the general public what this disease really is about - and helping them understand that what treatments that help other ppl may actually harm us.
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Hi @Since2010, and welcome to the forums! :)

I'm not sure what you mean by 'turned upside down', though. What do you mean by blood pressure being 'turned upside down', for instance?
 
One thing I've always wished Nancy Klimas would publish is the basis for her statement at a conference that when PWME over-exert themselves, the autonomic system tanks first and takes the immune system with it.
 
I’d like a review of all research involving ME/CFS (or variants of the name) which breaks down results by diagnostic factors used and observed throughout the trial. Ideally complete with total numbers observed and stats for significance (retaining large effect size even in cases of small significance but just for the purpose of providing leads for further research).
I’m interested in all observed correlation of signs, symptoms and diagnostics broken down into subsets.

I believe this would result in a very holey picture and a number of erroneous indications but at this stage I think it’s useful to highlight holes and gaps and what is missing.

The point of this thread overall.
 
JemPD said:
I cant find it. I'm sure i saw it but it was old & some yrs ago that i saw it. Perhaps i've gone bonkers & it was by someone else, but i really think it was either White, Wessely or Sharpe, because i remember thinking how they were not advertising that particular study as it didnt say what they wanted it to. I will keep looking, i'm irritated because i had it bookmarked i'm sure but my computer crashed & the back up got corrupted so i lost them all :-/

I did however find this https://www.ncbi.nlm.nih.gov/pubmed/11200949
full text here
https://pdfs.semanticscholar.org/134a/add57c35924bc3c4304672acb473d573895a.pdf about deconditioning not being a perpetuating factor in CFS from 2001.

But reading the full text you can see how the authors are scrabbling about trying to find some other psychological reason for their results - the less fit PWCFS are the less they do as opposed to sedentary controls.... err how about 'because they feel ill'.
But that's digressing from the main topic.

What i'd really like to see is a comprehensive review of all the studies that currently specifically state that the results are inconsistent with deconditioning, or disprove deconditioning theory, rather than appearing to 'prove' some other theory..... what i mean is rather than "it cant be deconditioning because it's ....'metabolic/immune/autoimmune/mitochondrial/whatever'", I think we need a review of studies that are directly challenging the deconditioning paradigm & state so in the abstract - so eg exercise studies using sedentary controls etc.
I mean i know about the 2 day CPET studies but I've read loads more over the yrs, unfortunately its all just a blur now.

If all those could be collated into a review to be given to the likes of GPs/Physios etc it'd be brill
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I agree with your idea I think but would approach I differently:
I’d like all the literature reviewed and analysed for flaws in methodology, and more importantly, bungled analysis. I think there is a lot of literature out there which seeks to prove that something works (and fails but they try to explain it away) or that ME/CFS is a cognitive problem etc whose methodology might not be flawed but the assumptions of the researcher is. We might find conclusions from the raw data, combined and collated, which tell an entirely different story.
Sorry, too general. Will think about it and see if I come up with a more focused item.
Thanks for the question @Sasha
 
Sasha said:
Hi @Since2010, and welcome to the forums! :)

I'm not sure what you mean by 'turned upside down', though. What do you mean by blood pressure being 'turned upside down', for instance?
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Hi Sasha. By "upside down", I mean that for many PWME, every system/function operates in the opposite way of what it should: e.g. blood pressure falls instead of stabilising when we're upright (orthostatic intolerance), cortisol doesn't rise when we wake up, sleep patterns are distorted or inverted (some ppl are awake all night and sleep most of the day), exercise worsens our symptoms instead of making us feel better etc.
 
Cazza said:
2. Familial inheritance patterns. Again, the literature is a bit thin, but there might be enough there. Certainly after OMF gets their inheritance study underway we might have some more data points.
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Inheritance patterns of ME/CFS, but also other potentially related / potentially confounding conditions in close family members: EDS, mast cell disorders, thyroid problems, pernicious anaemia, other autoimmune/inflammatory conditions, plus major depressive disorder, anxiety etc etc. I think Fluge/Mella said they had thought that a large number of ME/CFS patients have autoimmunity in their close relatives but I'm not sure I've ever seen an actual statistical study to that effect.

(I am totally biased here due to a very strong family history on one side - discovered after I got ill - of various autoimmune disorders).
 
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