Discussion in 'BioMedical ME/CFS Research' started by Andy, Dec 8, 2018.
Open access at https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1713-2
That sounds interesting subject to reading the full text.
The diagnosis of ME/CFS was not confirmed by the research team. Instead they looked at all patients who've received the ICD9-CM code 780.71 for CFS in the national insurance files.
in ICD9-CM CFS was listed under signs and symptoms instead of a neurological disease. Research has previously shown that about 40% of CFS diagnosis by GP's are incorrect, and I doubt that Taiwanese colleagues will have done much better.
I even doubt if the research team has a full understanding of ME/CFS, as they write that "chronic fatigue syndrome shares several similar features with post-traumatic stress disorder in terms of the attenuation of HPA axis response."
So I think this is mostly a study of unexplained chronic fatigue, and that the results are invalid for ME/CFS.
Sounds like they are talking about sunburn as opposed to heat injury. Although I used to get mild to moderate sunburns as a child, it stopped when I was a teenager and no longer had access to a pool.
However, I went out on a friend's catamaran in my early twenties - one or two years before the onset of ME - and got quite a severe, blistering burn on my arms and torso (w/ fairly large areas of fluid under the skin). It did make me feel pretty sick, in an immune response kind of way, for several days. I probably should have gone to the ER or seen my doctor, but I did not.
I don't know if a bad sunburn itself could make you more likely to get ME. If there is a connection, it might be something tangentially related that makes you more susceptible to sunburn.
That might be the case, but this is not an unexpected finding. Epigenetic changes in burns are similar to sepsis, and there are some researchers who think ME might be like sepsis, a form of chronic sepsis, due to our epigenetic similarity.
As always an initial study must be considered tentative.
We also need to consider burns as a potential trigger. Indeed a lot of the research points to a wide range of potential triggers, though viruses are number one in ME. Others include both cancer and chemotherapy.
Similar problems with doctors miscoding illnesses probably contaminate a lot of epidemiological research in CFS and ME.
If there isn't an abnormal response to exertion it isn't ME. Simple enough, but we are still stuck with fatigue being seen as cardinal. Chronic fatigue is being seen as identical to CFS - also known as ME - far too often which is messing up all the research. Burns may be a trigger for ME but we will never know unless they actually look at ME patients.
This has been a major issue for nearly three decades now. We need diagnostic biomarkers, and a lot of these assumptions will go away.
A diagnostic marker is the ultimate goal, but most diseases are observed first. A similar pattern of symptoms is noted then it is worked out what is going wrong biologically. Autism is diagnosed with an 80 item questionnaire administered by a psychiatrist and it is still not known exactly what is going wrong in the brain. MS was diagnosed as possible, probable then definite for many years until the technology became available to see into the brain and our disease may be a product of biochemistry that is just not quite there yet.
It is ignorance, deliberately engendered that is causing the confusion for us.
... and still claimed by some to be psychiatric.
MS was diagnosed as psychiatric too.
I have brought up this point before, but Montoya emphasises it. Attitudes change when the technology changes. Diabetes was a psych disorder, then they discovered urinary glucose.
We already have maybe 2500 biochemical markers, though a few will be false positives. Many more are probably waiting to be discovered.
Psychogenic claims lie in the shadow of ignorance. Once enough biomedical markers become available then this changes. There is however a delay. Having the tests available to doctors will be a turning point. Currently our best tests have 100% sensitivity. This is enough to show biological factors. What it does not show, though it does currently indicate, is that some of these markers are unlikely to be found in other diseases. That is our real hurdle now ... we have the biochemical markers, they are sensitive, but we need to show they are specific to ME.
There is also a risk that ME is two or more diseases. This is currently looking to be possible for type 2 diabetes, only it may be 5 diseases. However its highly likely ME is one disease with different initiating factors and complications.
The instants rate of 1.6 cases per thousand = 0 .16% new cases per year. That is implausibly hi given that prevalence (two cases) is around 0.2%. So I would agree that this is not measuring ME/CFS, particularly as they didn’t do a proper diagnosis.
There I would be extremely interested to see what the true incidence rate of me/CFS was after burns.
We cannot say that, though its the implication. The reason is that incidence of ME might vary with severity of the initiating event, and bad or extensive burns are right up there on severity. There is some data, though again with epidemiological issues, that shows that ME incidence might be over 10% if the group selected has a severe viral infection. I see no reason that this should not apply to other severe causes.
In short we don't know if these findings are accurate, but we should be cautious about accepting their figures. We need to know a whole lot more, and have better follow-up studies, particularly independent studies.
"burn patients who suffer from infections are more likely to develop CFS compared with control groups."
"Deformity of the face and hands and disabilities are often prevalent in patients with large TBSA of burns; consequently, depression, anxiety disorder, and PTSD were also reported in this population."
"psychosocial interventions (such as stress management skills) were shown to improve the symptoms and severity of CFS "
"CFS diagnosis can overlap with that of depression, depression is associated with aggravated pain and insomnia, not with new onset of pain, migraine, irritable bowel, or autonomic dysfunction . and patients with depression are more likely to develop chronic pain and fatigue-related conditions later in life .
Depression is also a common comorbidity in patients with burn injury. Because of the unavailability of biomarkers for definite diagnosis of CFS, we cannot rule out the possibility of misdiagnosis of the population with depression."
These authors are HARKing and or fishing for corellations in their database. They have published multiple studies so far and don't appear to be correcting for the fact that they are testing many hypotheses.
The increased association is weak and any genuine association may simply be due to greater diagnosis rates due to increased presentation to doctors for example.
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