Overview main findings / research themes today

[Belgiangirl]

And why are they hot - or why should they be not?

As far as I can see, we've literature being released. Though like in any field. Most you can bring back to some sound lines of research, others are just replicas of older research (quiet legit in science).

Puzzling all the evidence and studies together The big groups (please correct me, fill me in and help me out)

1) CFS is a cardiovasculair problem, even a precursor of real heart failure

2) CFS patients show big leaps in their immunity (lymph nodes being to large from diminished or increased immunity cells)

3) CFS is an auto-immune disorder - the body attacks itself?

4) Mitochondrial problems : problems to the very energy producing motors of the cells, no wonder patients have no energy

5) Sensitive patients -> leaky gut -> penetration of all kinds of litter in the body, poisoning the body and all organs, more and more while more of the intenstinal wall fals apart, leaving no room for "good stuff" or counterbalancing it

6) something is wrong with the gut microbiome

7) virusses or bacterias survived within years of these patients, all the time triggering their immune system, but making them prone to other diseases -> even more bacterias and viruses or harmful substances make their way

8) HPA-as is being stretched too far, the body has been to long in a fight/flight state and is crashing now

9) Certain brain areas are used in a different way than controls do: asking much more energy

10) Patients are in a kind of hibernation mood

11) Roles of sexual hormons (esp in woman, woman tend to go earlier in menopause with CFS, ...)

12) Endocrinological basis

I'm trying to get a hint of the literature so far.
Does also known something more about the prognosis of CFS persons?


Is here any-one being in touch with research groups? I'm only reading here diagonally just for a few weeks and in my opinion, there's tons and tons of information worth looking into, being gathered by all these individual cases.

 

[RogerBlack]

I haven't seen any convincing literature on early morbidity.
https://www.ncbi.nlm.nih.gov/pubmed/28070451 claims to be such.

However, this has the huge problem that it selected people who died with ME, and were contactable via social media.
https://www.ncbi.nlm.nih.gov/pubmed/26873808 -
Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register.
This picks up perhaps a wider than useful cohort of CFS and found nothing other than high suicide rate.

I am unsure on the role if any of the microbiome.
Yes, it's disturbed.
I am unsure if there is any disease in which it is not disturbed.

I think it's safe to say a major component is immune related in some manner.

What we've not seen enough of is studies into the effects of CFS longitudinally.
There are lots of single-point studies, some CPET studies, but very few studies that actually back up what some have said for a long time - avoid overexertion, ...

Research quality and thoughtfullness varies.
It can be as little as a team or individual quickly writes a grant without much knowledge in the field, based off an obvious question brought up by previous papers, without paying much attention to the rest of the field.

Ideally, for example, new researchers would at least be aware of the allegations of deconditioning/fear-avoidance, what the patient community is saying are problems, the fact that various immunomodularity, whateverome and metabolic studies are going on.
This doesn't always seem to be the case.

One extra question asked to patients can transform a study, and that question may be informed by areas outside your normal field as a scientist.

A lot of meta analyses tend to neglect the fact that that this extra question isn't there, and do dodgy extrapolation.
For example, the Crawley et al studies on the prevalance of CFS.

 

[Belgiangirl]

I had hope for more replies digging deeper and connecting more research with each other.

I come back to your post later, because I'm too tired...

Meanwhile I wanted to mention that it seems that in the 90ies there was not such a big trend to putting everything in the psychological / stress way (it is a bit ironic to see that they say it's all about stress: educated as a psychologist, I know that anything has to do with stress, even catching a cold ... let alone that even that cold will induce stress ... ).

If you look at this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC507629/

The research has been much more physiology-based looking for differing markers?

 

[Belgiangirl]

I haven't seen any convincing literature on early morbidity.
https://www.ncbi.nlm.nih.gov/pubmed/28070451 claims to be such.

However, this has the huge problem that it selected people who died with ME, and were contactable via social media.
https://www.ncbi.nlm.nih.gov/pubmed/26873808 -
Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register.
This picks up perhaps a wider than useful cohort of CFS and found nothing other than high suicide rate.

I read this study some time ago.
What I read was for me a shocking picture:
more fatalities from cancer (esp leukemia and lymphomas as I remember well, at least one of them... which is consistent with my lymph nodes being always swollen and strange blood results) on a younger age (around 40?...) than the control population and also more deaths due heart failure. Also 20 years younger than to be expected in a control population.
That's why I mentioned heart failure earlier.

I am unsure on the role if any of the microbiome.
Yes, it's disturbed.
I am unsure if there is any disease in which it is not disturbed.

I agree, this microbiome intestinal thing seems like a research hype to me. I know there's a third nervous system inside and a lot of hormones are created there. We are what we eat obviously, but today there's being acted like all diseases are being caused there. I doubt that is the case.

I think it's safe to say a major component is immune related in some manner.

I agree completely. Wheter auto-immune or just hyperimmune is not clear to me.
At least inflammation stands central, also common to many diseases but still...

What we've not seen enough of is studies into the effects of CFS longitudinally.
There are lots of single-point studies, some CPET studies, but very few studies that actually back up what some have said for a long time - avoid overexertion, ...

Research quality and thoughtfullness varies.
It can be as little as a team or individual quickly writes a grant without much knowledge in the field, based off an obvious question brought up by previous papers, without paying much attention to the rest of the field.

Ideally, for example, new researchers would at least be aware of the allegations of deconditioning/fear-avoidance, what the patient community is saying are problems, the fact that various immunomodularity, whateverome and metabolic studies are going on.
This doesn't always seem to be the case.

One extra question asked to patients can transform a study, and that question may be informed by areas outside your normal field as a scientist.

A lot of meta analyses tend to neglect the fact that that this extra question isn't there, and do dodgy extrapolation.
For example, the Crawley et al studies on the prevalance of CFS.

Yes I agree.

I just hope more researcheres would be triggered by the many questions that are still unanswered but it is not a very sexy disease and in some moments even i am not sure if it really exists.
Because it often seems to be that a lot of persons have psychological problems or are not even really ill, confusing to put the diagnosis.
I mean: how are you sure that the group you'll research are real CFS patients and not a bunch of hypochandriacs eg?

Second, how many may be having a group of all kinds of allergies, maybe lupus, prodromal syndromes, mastocytosis, sarcoidosis, ... or i dont know what what's not yet revealed.
From what I hear from doctors, CFS is just a container diagnosis if they just are lost nad don't know where to look for it anymore.

I miss the combination of all evidence that exists today about physiological differences than control groups being put together. From that point we all can go form theories.

I believe mostly in endocrinological and think it is highly underestimated in the literature and by patients or doctors...
Secondly also immunological / allergenic - reaction to builtup and combination of enivornment pollutants or food intolerances which are not yet fully understand especially not with multitoxics.

A lot of progress can be made by looking into medical records of CFS patients according to me. I think we would learn so much of those. For now all we can do is systematically write down our experiences ourselves for own case research I guess?

 

[RogerBlack]

I read this study some time ago.
What I read was for me a shocking picture:
more fatalities from cancer (esp leukemia and lymphomas as I remember well, at least one of them... which is consistent with my lymph nodes being always swollen and strange blood results) on a younger age (around 40?...) than the control population and also more deaths due heart failure. Also 20 years younger than to be expected in a control population.
That's why I mentioned heart failure earlier.

I'm not convinced at all.
"Family, friends, and caregivers of deceased individuals with ME or CFS were recruited through social media, patient newsletters, emails, and advocate websites. This study analyzed data including cause and age of death for 56 individuals identified as having ME or CFS."

I'm not sure how else you could do this without access through medical professionals, but selecting this cohort massively risks massively skewing results.
It assumes:
The incidence of CFS has remained constant for the last 60 years.
The diagnosis of CFS many years after onset is good (someone getting CFS in 1970 will have been rediagnosed).
Caregivers to people of different ages will have the same social media and forum presence.
People are as likely to post or continue to participate in forums in a contactable way if their loved one passes away at 80 as at 20.
Only the severest cohort is measured, as people with milder CFS are not going in general to have as much carer social media presence.

 

[Belgiangirl]

I'm scientifically educated myself but unfortunately dont have access to the full paper. I wouldn't be to quick to draw this conclusion. Selecting study participants trough the internet is very common these days as everyone is on the internet, the only ones you might exclude are individuals +85. This just would make the study more sound.

I also think most of the people who wants got the diagnosis unfortunatelly die with it.

Other studies also mention this finding: early death of cardiovascular cause
https://www.ncbi.nlm.nih.gov/pubmed/20010505

It is coherent with whole sets of findings in which occured that patients with CFS had cardiovascular abnormalities, which fuelled doctor Visser (Netherlands) in his intrest/treatment of the patients.
If you read on this forum even you can see that many do suffer from CVproblems.

E.g. small heart syndrome in CFS
http://onlinelibrary.wiley.com/doi/10.1002/clc.20227/full