• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

What are seminal studies in ME research?

RogerBlack

Senior Member
Messages
902
American researchers and clinicians would not necessarily agree, even if they did believe deconditioning was part of the illness-picture. I've heard lots of US physicians pushing patients to exercise more because they fear their genuinely exhausted patients will also become deconditioned, which to their uninformed knowledge, would worsen matters. This is totally separate from the paradigm of "movement phobia".

I was trying to explain the sentence in the paper
The lack of any significant differences between groups for the first exercise test would appear to support a deconditioning hypothesis for CFS symptoms.

Whereas for classical cardiopulmenary-muscular deconditioning, this seems precisely the opposite of what it supports.
And for fear-avoidance loop, it's just as bad.

In any case, I've mailed the corresponding author, and we'll see if they can clarify anything.
 
Last edited:

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@RogerBlack -- I think they mean "at first glance, the deconditioned and ME/CFS populations appear to do about as well as one another on the exercise test, which would seem to support the idea that they are similar... however..."
 

RogerBlack

Senior Member
Messages
902
@RogerBlack -- I think they mean "at first glance, the deconditioned and ME/CFS populations appear to do about as well as one another on the exercise test, which would seem to support the idea that they are similar... however..."

But these were not deconditioned controls.
They were controls that diddn't exercise vigorously for 30 minutes a day, and were not in any way limited by their muscular condition.

Above author has just replied, raising up the energy to read it.
 

RogerBlack

Senior Member
Messages
902
I'd like to know about deconditioned controls, preferably by Saturday ;)

(NICE response)


The response. (from the corresponding author of the paper)
Thank you for your message and your question. The statement we made was based on the fact we didn't observe significant differences between people with ME/CFS and sedentary people on measurements we obtained during a first cardiopulmonary exercise test. Had we stopped at a single test, as many research groups do (when they employ cardiopulmonary exercise testing

at all), we might have concluded ME/CFS is due to deconditioning.

However, we noted significant differences in how the body utilizes oxygen on a second test conducted 24 hours later, when people with ME/CFS demonstrated post-exertional symptoms but sedentary people did not. It is these differences in second-test measurements that we think are an important hallmark of post-exertional state, and definitely can not be explained by deconditioning alone. In fact, we think our observations align well with emerging evidence of dysfunctional oxygen-based (aerobic) metabolism in people with ME/CFS.

Todd E. Davenport, PT, DPT, MPH, OCS

So, it was not 'consistent with deconditioning as we find in this work' but 'consistent with deconditioning, but as we explain, only apparently and misleading'.

And JaimeS had it. Thought it was best to clarify, as on a first glance otherwise, that sentence is very damning if you're reading it with a perspective of saying that CFS is purely deconditioning.
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
Schutzer's study is my favourite. Clearly distinguishes CFS from healthy controls and chronic Lyme, and gives a plethora of potential biomarkers.

The major problem with this study is the undefined term 'cfs'. It does not seem to mean 'ME' because there is no mention of post exertional malaise (PEM). So 'cfs' in this study refers to 'tired people' I think?
 

RogerBlack

Senior Member
Messages
902
The major problem with this study is the undefined term 'cfs'. It does not seem to mean 'ME' because there is no mention of post exertional malaise (PEM). So 'cfs' in this study refers to 'tired people' I think?

from 30 women and 13 men (n = 43) who fulfilled the 1994 case definition for CFS [1].
...
[1]1. Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, et al. (1994) The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. ...
https://www.ncbi.nlm.nih.gov/pubmed/7978722
So, no, PEM is not wholly required, it's one criteria required of 8, of which 4 have to be met, in a way that does not predate the fatigue.

http://www.cfids-me.org/cdcdefine.html - properly implemented, this will throw out a lot of 'tired' people.

It specifically requires >6 months, a definite onset, a set of symptoms throughout that 6 months, and goes into exclusions.

But yes, it does not absolutely require PEM at any time.
 

cigana

Senior Member
Messages
1,095
Location
UK
The major problem with this study is the undefined term 'cfs'. It does not seem to mean 'ME' because there is no mention of post exertional malaise (PEM). So 'cfs' in this study refers to 'tired people' I think?
Yes but I think that just makes it all the more impressive that they were able to find so many unique proteins. Presumably there could be multiple CFS subsets to be found within the 738.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
PACEgate absorbed me for all of yesterday. Trying to report the facts without sensationalizing, but the actual content is pretty sensational in places. I can't change what actually happened! :confused:
You report dispassionately, PACE published, backlash points made, lawsuit, fraud displayed, journal defends fraud. As long as you cite your sources your not sensationalizing, your reporting :)
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
No one was sued for fraud, were they? Isn't fraud a legal and specific term?
Doctoring their results by changing their thresholds, conflicts of interest, obtaining patient consent under false pretenses.
I do wish they would be sued.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Thanks again to everyone who helped out. Exercise physiology section done: I went for
  • Light (2012) --> changes in cytokines and gene expression post-exercise
  • Snell (2013) --> first second-day CPET study (so far as I know) -- interesting differences in VO2
  • Keller (2014) --> similar to Snell, but interesting in that they measured more variables and noted differences in the first and second day in the same patients
  • Vermeulen & Vermeulen (2014) --> Big differences between patients and sedentary controls re: 2nd day CPET
  • and... sigh... PACE.
Shukla (2015) was in microbiome section.

Mentioned and linked a bunch of others, but those were the ones where I chose to go into more detail.

Re: our concerns via Vermeulen. I think we shouldn't say that the patients were deconditioned, but that they were sedentary. They exercised less than 1 hour per week! Moreover, they were recruited from a clinic that specialized in cardiac medicine, so there was a good chance that they might have had some kind of developing condition; they were careful to exclude a variety of medication-taking people, though: anything that could have affected pulmonary, cardiac, metabolic, etc.

And still, O2 extraction at peak was found to be less than half of that of these ‘healthy’ controls.

The Vermeulen study was also interesting because they included a fatigued cohort that didn't meet CFS criteria. A la that DeMeirlier paper, these patients' values seemed to be in the middle of Fukuda CFS and healthy controls.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Hey, can anyone locate the full Canadian Consensus Criteria? (not the medical professionals version.) The one that @A.B. linked -- and the one on MEpedia -- are the first 30 pages. It cuts off mid-word and of course, the references section is therefore totally absent. Can anyone dig through their personal archives to locate a full copy? Please check and be sure it's more than 30 pages...