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

I've been wishing for ages that someone would write a review paper reviewing the established biomedical differences between ME/CFS and deconditioning.

My impression is that a lot is known about the biology of deconditioning, and that the BPS school didn't bother to read any of it before coming up with their idea that ME/CFS was simply deconditioning plus 'false illness beliefs'. Wouldn't it have been great if we'd had a review paper before PACE had even got funded? One that we could have pointed to to squash that trial before it even got started and wasted £5 million?

Wouldn't it be great if now, every time somebody said, 'You ME patients are just deconditioned,' we could point to such a paper?

Do you agree?

What papers do we wish existed, that could be written now based on research that's already out there? Or perhaps on data that's already sitting in the drawer?

[Edit: My list originally included, 'Or that could be easily got?' but that caused confusion and now Sean has started a new thread for research that would require new data, here.]

Should we make a list, and (as S4ME) promote it to researchers?

What are the missing papers?

 

Should have tagged @Andy, @Valentijn, @Adrian, for instance...

 

A review of metabolomic abnormalities. In general reviews are useful to lower the entry barrier for new researchers. There is much poor quality information out there.

I would like to see more post-mortem studies. They could greatly speed up progress.

It would be good if studies included control groups with other illnesses.

Examining the reaction to prolonged glucose tollerance tests in ME/CFS.

 

I would like an update of the 2006 paper by Anthony Komaroff, "Top Ten Discoveries about the Biology of CFS". It was embedded in another article by Komaroff, "What Causes CFS", which was published in a special issue of The CFIDS Chronicle.

 

I'd like a paper discussing the biomedical basis and evidence for expecting that graded exercise therapy would be likely to be damaging to PWME. I've seen statements about that recently from a number of researchers but a paper giving the evidence would be much more powerful.

Imagine if we had something like that right now to submit to the NICE review.

 

@Jonathan Edwards - what papers do you think are missing?

Is a paper missing on the inadvisability of using subjective measures in an open-label trial, for example?

 

I like this thread

I would like to see more studies on the cognitive effects of ME/CFS, sometimes i don't know whats worse, the physical or cognitive problems.
Everything from memory problems, inability to concentrate, math ability, cognitive fatigue, stamina and so forth.

 

This is a good idea Sasha.
Wasn't there a paper by White that actually contradicted the 'deconditioning' theory? I'll try to find it.

 

As studies are done, we can collect significant data, just at the cost of the forms and data Analysis.

• 1) Prevalence of transmissions to children (father with CFS to Child, Mother with CFS to child).
• 2) Prevalence of any other family member and relationship and order of sickness onset.
• 3) Is the patient contagious? how many people? type of contact?
• 4) Consequences of CFS blood donations.
• 5) Consequences of CFS organ donations.
• 6) Prevalence of trigger of CFS (flue like syndrome, EBV infections...).
• 7) Prevalence of remissions (number, duration, what re-triggered CFS...)
• 8) Prevalence of Types of CFS (progressive, relapsing / remitting, Stable).
• 9) Rate of remissions.
• 10) Rate of Deaths by natural causes (what are the most common complications of CFS).
• 11) Prevalence of the Comorbid conditions (what are they)...
• 
  
• Gosh so many questions I can go all day.

 

There is some suggestion from Dr. Davis' work with the nano-needle that a small molecule may be interfering with the cellular metabolism of ME patients.

If true, could this be demonstrated by giving both healthy and ME patient serum to mice and looking for different responses between the two groups?

I wondered if it was even possible to safely give human serum to mice, but apparently it is. Old mice have been "rejuvenated" after an injection of human teenage blood.
https://www.newscientist.com/article/2112829-blood-from-human-teens-rejuvenates-body-and-brains-of-old-mice/

I would assume that any response in mice would be temporary, since some ongoing process in ME patients (but absent in mice) is probably needed to replenish the postulated molecule.

 

I recall one or two papers from Julia Newton's group that included explicit statements that "this is not consistent with deconditioning" but don't have the energy to find them right now--sorry!

 

From the bits and pieces i have picked up from here and the other place there seem to have been a significant number of studies , many from 1980s and 2
1990s which have been " forgotten about". ( Eg blood cell shape, colour and stickiness, Behan' s ANT theory).
Given the rate of technological innovation in the interim, pethaps it would be equally as productive to revisit these - who knows what could now be uncovered.

 

I'd like to see that study. Currently, many children with ME/CFS likely go misdiagnosed.

 

Guys, can we get things back on track a bit and talk about what 'missing' papers we want?

I'd also like to steer us back to the original remit:

What papers do we wish existed, that could be written now based on research that's already out there? Or perhaps on data that's already sitting in the drawer? Or that could be easily got?​

...which is not to talk about our wishlist if we had $20m to spend (that would be interesting but it would be for another thread) but to talk about things that can be easily done, now.

My hope is that we could promote such a list to researchers and they'd think, 'Hey, I've got that data - patients want it analysed to show whether X is the case - I can do that easily. I'll do it!'

Or, 'I know that literature - I could easily produce a review on that question. I'll do it!'

That is, I'm looking for things that are both needed and genuinely actionable, now.

Thanks!

 

Guys, can I remind you again:

https://www.s4me.info/threads/what-...uld-write-about-me-cfs.1859/page-2#post-32574



Some interesting points are being raised about other issues but they really need to be on another thread.

 

I have moved the posts that I considered to be off-topic to a new thread.

 

I agree with this, a review looking at what we already know in the cognitive deficits that arise from ME: Are we yet in a position to say that what changes are permanent and what changes are reversible? Are some cognitive deficits common to all people with ME and do others vary? Do the deficits observed reflect a general impairment of processing capacity or do some also reflect focal neurological impairment? Do we yet know what further research needs to take place? Obviously this is less important than establishing a treatment, but as long as we have to live without a treatment, effective symptom management requires understanding what the symptoms are.

It would also be useful to have the likely and the potential cognitive symptoms set out in a clear simple form as if people have had no previous contact with neuropsychological impairments it can be very hard to explain the symptoms, or indeed to understand them.

 

Yep

 

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