What makes CFS different from somatoform disorder

[bostjan01]

I'm wondering if there are any studies that show anything physically wrong in body. I'm wondering how much is it possible I'm just psychologically sick.

 

[gregh286]

if you can run 3-5 miles on a treadmill without PEM, likely not CFS.

 

[alex3619]

Well, first CFS and ME have hundreds of known physical abnormalities. Somatoform has ... nothing. CFS and ME have occured in cluster outbreaks. They have tests that reliably show things that are wrong, but most doctors do not even know the tests exist.

Somatoform disorder is a presumed disorder that is far less credible than a diagnosis of CFS, ME, or any of the other discrete problems they want to label somatoform. As a research question its still open as to whether or not it even exists, but the extremely weak evidence for it suggests there may not be any such thing.

Instead what we have is most likely failure to diagnose. This is not entirely the fault of the psychiatrists, because the history of psychogenic diagnoses is a history of waiting for medical technology to catch up and find a real diagnosis. Yet they keep proposing it, and falling for it. They would be much better served, as would patients and society, if they simply said there are things they have no idea about, they are not psychiatric disorders most of the time, but they can try to help people cope a bit better.

In summary, there are no objective findings indicating somatoform disorders even exist. They certainly were not right for the probably hundreds of diseases that we have finally found answers for, including cancer, heart diseases, diabetes, etc. etc.

ME and CFS now have hundreds of objective findings. These are being investigated to see which is diagnostic, either singly or together.

For example, ME produces a very distinctive result using the two day CPET protocol. There is a repeat study underway to see if the distinctive and unique structural changes in the brain are diagnostic. There are multiple blood and spinal fluid markers that look promising.

Finally the treatment for somatoform might do someone a lot of damage if they have ME and its not recognised.

The main practical difference is that those claiming its somatoform often claim to have answers but there is no objective evidence that their treatments work. On the other hand there is not much that can be done to treat ME aside from palliative measures and a few treatments that work on some patients fairly well, but not all patients. Some simple things are free though, like learning to pace activity.

 

[HowToEscape?]

@alex3619

Thank you for posting that.
That is the type of thing I would like to say, if only I could get my brain together and ignore other things long enough to learn some science, and then remember it, and then…

As it is we rely on a few of us to express what many or most of us cannot.

 

[femtosecond99]

There isn't really any difference, other than presumed etiology. Somatoform (or psychosomatic) doesn't actually mean there are no physical abnormalities...that would be hypochondria. There are many well established physical abnormalities/symptoms that we know can be caused by psychological factors, such as modulation of the immune system in response to stressors, release of stomach acid in response to stress, reduction in hippocampus volume after long-term stress, activation and suppression of HPA axis, autonomic nervous system, etc.

With CFS there are no established biomarkers for CFS (repeat CPET was thought to be one, but the recent MS study didn't replicate the earlier findings). There are some abnormalities that are sometimes (or often) found, and these seem to be similar to the ones seen in somatoform disorders. The main ones seem to be related to the stress system: ANS, HPA axis and immune system.

 

[alex3619]

Somatoform (or psychosomatic) doesn't actually mean there are no physical abnormalities...that would be hypochondria.

Technically this is correct. In practice it is not. Typically when someone is diagnosed with a somatoform disorder the physical problems, if any have been identified, are ignored by the doctors, and patients are taught to ignore them. Its also the case that testing for alternative diagnoses is typically stopped. Somatoform is an hypothetical diagnosis with far less credible evidence than ME or CFS.

There are very specific responses known to occur with respect to possible stressors, both experiential and physical stressors. Those responses do NOT give permission to allow an inference of just about any other physical symptom you can think of, that is an irrational jump. Could such broader responses exist? Hypothetically. Have they ever been proven? No.

If you run any list of former presumed psychogenic disorders, since disproven, versus proven psychogenic disorders, you wind up with a ratio of many to zero. They have never proven the existence of such disorders. Its entirely inferential and fallacious reasoning at that. In patient numbers its probably more like hundreds of millions to zero.

So the difference is huge.

Just consider our exercise physiology differences. We do not know what causes them. Is it possible that its psychogenic? Again, an hypothetical yes. Is there any credible evidence for psychogenic causation? No. Is there credible evidence of physiological mechanisms? Yes.

Psychogenic diagnoses are unproven and hypothetical constructs. They have no place in either evidence based nor scientific medicine. So if they are not based on evidence, or science, then they are .... ?

 

[femtosecond99]

There are very specific responses known to occur with respect to possible stressors, both experiential and physical stressors. Those responses do NOT give permission to allow an inference of just about any other physical symptom you can think of, that is an irrational jump. Could such broader responses exist? Hypothetically. Have they ever been proven? No.

If you run any list of former presumed psychogenic disorders, since disproven, versus proven psychogenic disorders, you wind up with a ratio of many to zero. They have never proven the existence of such disorders. Its entirely inferential and fallacious reasoning at that. In patient numbers its probably more like hundreds of millions to zero.

While I agree that doctors shouldn't automatically jump to the psychosomatic conclusion, I think they also shouldn't completely ignore it. Neither is good for patients, and from what I can tell (in the UK at least), most doctors have the balance about right. In the USA they tend to be more on the organic side, ignoring psychological factors.

It's also not true that there has not been any proven psychosomatic illnesses. It's pretty well established that headaches, back/muscle pain, and IBS can be caused by psychological stress, for example. Obviously there are other possible causes of these conditions as well. Even for stomach ulcer, it is thought that stress is a significant factor. Most people with H.Pylori infection don't get ulcers, and studies show that stress is associated with development of peptic ulcers. We know for certain that cortisol causes the release of stomach acid, so it's very plausible that stress is a factor in causing ulcers.

Even for MS, stress seems to be a factor in causing relapses. It's not the only factor, as we know that lack of vitamin D and EBV are risk factors. We do know that stress reactivates EBV, so it's possible that stress causes EBV reactivation, which then infects the brain causing MS symptoms. Or it could be that some of the MS symptoms such as fatigue and depression are partially caused by stress that is unrelated to MS. There seems to be a lot of parallels with MS and severe CFS which is interesting. The diagnosis of MS seems to be pretty hit and miss...the tests seem to have pretty low sensitivity and specificity.

 

[pattismith]

Psychogenic diagnoses are unproven and hypothetical constructs. They have no place in either evidence based nor scientific medicine. So if they are not based on evidence, or science, then they are .... ?

My understanding is that the psychogenic hypothesis is an hypothetical construct to explain diseases when they are not already rationally/physically explained, exactely like religions had their own stories/hypothetical constructs in order to explain our environment's running when we were not able to get it scientifically.

The fact that psychic stressors have a huge impact on illness doesn't mean it's psycogenic, it just means that psy stressors have an impact on our brain functions, as well as on our immune system, with huge consequencies on our health, and real diseases at the end.

 

[alex3619]

It's pretty well established that headaches, back/muscle pain, and IBS can be caused by psychological stress, for example.

Show me ANY definitive paper, properly designed, peer reviewed, and replicated. In particular show me such a paper involving any major disease entity, like IBS, which is really a disease cluster anyway. Show me the proven mechanism. Show me the objective biomedical tests. There is no question that psychological trauma can initiate physiological changes, but thereafter the issue is primarily physical. Stress, even as used here, invokes physiological change. You do not need to invoke much else after that. The problem is that talking about it as a psychiatric disorder leaves a nebulous hypothetical thing called the mind in the equation. I see no reason to believe that mind is anything other than an observable brain function. Taking the nebulous out of the equation helps avoid errors in reasoning. Or you can load everything with so many caveats that you cannot be sure of the reasoning anyway.

 

[alex3619]

The fact that psychic stressors have a huge impact on illness doesn't mean it's psycogenic, it just means that psy stressors have an impact on our brain functions, as well as on our immune system

Yes, stressors can trigger physiological change, but that change is what needs investigating, not the trigger.

In ME we typically have a viral trigger, but aside from a large subset with persistent infection the resulting problem is about what changes happened, not the trigger pathogen.

 

[bostjan01]

Which tests reliably show things are wrong? I was told there aren't any tests to show if you have disease or not diagnosis is made only based on symptoms. Or do you mean tests that Kenny De Meirleir performs but I'm wondering why conventional medicine doesn't use these tests that CFS doctors use like?

 

[Neunistiva]

I was told there aren't any tests to show if you have disease or not diagnosis is made only based on symptoms.

Most of these tests are available in research settings, and have been shown in scientific studies. They are usually not available in clinical settings, save for maybe CPET. But there is a difference between having to set diagnosis based on symptoms and there being no objective abnormalities.

Also, for something to be a diagnostic test, it has to be specific to that disease. For something to be proof of physical abnormalities, other diseases can have that abnormality as well.

 

[alex3619]

Also, for something to be a disgnostic test, it has to be specific to that disease. For something to be proof of physical abnormalities, other diseases can have that abnormality as well.

Hi, quite so. We have oodles of evidence of abnormal findings, but given such findings are found in other diseases like MS, sepsis, and diabetes, they are not diagnostic. The two day CPET might be diagnostic, but they are cautious about claiming that. The enlarged fasciculus findings from Stanford are being replicated right now. That might be unique, and might be viewable using various brain scans. The second hypometabolic study apparently is showing 77% of the findings in the first study hold up. That is, iirc, a mass spec study, but you need a top end machine and that probably means a first class facility. The tilt table test shows OI in a majority of patients. They are refining cytokine testing ... there appear to be stable subgroups rather than a universally stable finding, though one or two cytokines are still under investigation. Quantitative EEG images often show a host of problems. A sleep study is always warranted in ME. I am by no means listing all of them, only those I consider the most promising, and ignoring some of the newer cutting edge findings for now until I see if the results are replicable.

So ultimately what we are seeing is people conflating the lack of a diagnostic test with a lack of objective physical abnormalities.

 

[Neunistiva]

That is, iirc, a mass spec study, but you need a top end machine and that probably means a first class facility.

I hope I'm not derailing discussion too much but this is something that has been on my mind since Dr. Naviaux's news yesterday. Mass spectrometry machine that was used in that study can test something like more than 500 metabolites and costs half a million dollars and I have no chance of ever having access to such a machine in my country. But it might be that we don't need to. Only several metabolites could be enough to be diagnostic, provided someone shows they are not disrupted in other similar diseases.

So ultimately what we are seeing is people conflating the lack of a diagnostic test with a lack of objective physical abnormalit

Exactly

 

[Hope123]

With CFS there are no established biomarkers for CFS (repeat CPET was thought to be one, but the recent MS study didn't replicate the earlier findings). .

I'm not usually on the forum these days but this statement you made stands out. Which study are you referring to? I'm genuinely curious as I collect these articles.

Because if it is this 2017 one, what it shows is that in MS patients, MS subjects were able to reproduce their cardiometabolic parameters from one day to the next whereas ME/CFS patients were not able to. The conclusions from this study were:

On day 2, both CFS and MS had significantly reduced max workload compared to HC. On day 2, significant differences were apparent in WL between CFS and CFS HC (93 ± 37 W, 132 ± 42 W, P<0·042). CFS workload decreased on day 2, alongside a decrease in HR but with an increase in V˙O2 (ml kg min-1 ). This was in comparison with an increase in WL, HR and V˙O2 for CFS HC. MS demonstrated a decreased WL compared to MS HC on both days of the study (D1 81 ± 30 W, 116 ±30 W; D2 84 ± 29 W, 118 ± 36 W); however, patients with MS were able to achieve a higher WL on day 2 alongside MS HC.

"These results suggest that exercise exhibits a different physiological response in MS and CFS/ME, demonstrating repeated cardiovascular exercise testing as a valid measure for differentiating between fatigue conditions."

Note that the way they designated the healthy controls in this study could be confusing -- HC refers to healthy controls with CFS HC meaning controls matched to those with CFS and MS HC referring to healthy controls matched to MS. It adds to the 5 published studies from 4 independent research groups showing that 2-day CPET measures are not replicable in ME/CFS patients although the exact cardiometabolic measure (V02 max vs. max work load vs. workload at anaerobic threshold vs. VO2 at anaerobic threshold) and the degree of drop from the first day to the 2nd might be different. There are also results from 2 other groups which are similar but unpublished.

In fact, another review paper just came out recently -- not about ME/CFS - but verifying the small degree of difference between 2 different CPETs in healthy people and other conditions. And in 2015 there was a paper on sarcoidosis -- again unrelated to ME/CFS - showing that repeated CPET was not useful as the results did not differ much from one day to the next.

In terms of what is being talked about generally, I trained at the university where the "biopsychosocial" model of health originated in the 1970s -- and so, coincidentally, did 5 of well-known ME/CFS clinicians/ researchers in the US -- so it permeated the years I spent there, even 3 decades later. (Anyone who can name that school without looking it up gets a gold star!) And yet all of us who are in this field and trained there do not view ME/CFS as a psychiatric, psychological, or psychosomatic condition. (By the way, if the word psychosomatic is used "loosely" to get at interactions among these 3 different realms, why is it we rarely see congestive heart failure or rheumatoid arthritis, etc. termed as "psychosomatic" conditions?)

The model itself is not wrong but it's a matter of what is emphasized where, when, how, and why. For instance, many medical conditions could benefit from stress reduction or illness coping skills but we would not treat heart disease, chronic lung disease, cancer, or stroke without any medications. And these patients would feel justifiably incensed if doctors and researchers only focused on the "psycho" and "social" aspects to the exclusion or downplaying of the "bio". Why is it that psycho or social aspects are always the ones emphasized just because we don't know enough about the bio of a any condition?

That's what has happened in ME/CFS of the last few decades and it's only starting to turn the tide a bit now due to the efforts of many, many people around the world. If you are not familiar with the history of ME/CFS, please consider learning more about it -- one source, although it only goes up to the mid- 1990s, is Hilary Johnson's Osler's Web.

 

[Cinders66]

There isn't really any difference, other than presumed etiology. Somatoform (or psychosomatic) doesn't actually mean there are no physical abnormalities...that would be hypochondria. There are many well established physical abnormalities/symptoms that we know can be caused by psychological factors, such as modulation of the immune system in response to stressors, release of stomach acid in response to stress, reduction in hippocampus volume after long-term stress, activation and suppression of HPA axis, autonomic nervous system, etc.

With CFS there are no established biomarkers for CFS (repeat CPET was thought to be one, but the recent MS study didn't replicate the earlier findings). There are some abnormalities that are sometimes (or often) found, and these seem to be similar to the ones seen in somatoform disorders. The main ones seem to be related to the stress system: ANS, HPA axis and immune system.

Sorry you're wrong here. The aetiology on CFS , I prefer the terms ME or SEID, isn't just presumed and there is vast difference between it and a psychological disorder both in evidence and presentation. If you're familiar with the institute of medicine ME/CFS report 2015 you will see they reviewed all the existing credible research evidence to conclude not only that this was not a psychological illness , but that it was serious systemic DISEASE and there was enough evidence of the post exertional abnormalities you bizarrely dismiss (there's been several PEM studies which show abnormalities in aerobic energy production, gene expression and blood flow to brain etc) for them to include it in their criteria and recommend the name change to systemic exertion intolerance disease.

You sound like someone who wants to perpetuate the old mistaken ways on CFS and ignore the key immune and pain symptoms as well as the vast body of research that show that the illness cannot be lumped under psychogenic with the others that currently are, probably wrongly I bet.

 

[Cinders66]

While I agree that doctors shouldn't automatically jump to the psychosomatic conclusion, I think they also shouldn't completely ignore it. Neither is good for patients, and from what I can tell (in the UK at least), most doctors have the balance about right. In the USA they tend to be more on the organic side, ignoring psychological factors.

It's also not true that there has not been any proven psychosomatic illnesses. It's pretty well established that headaches, back/muscle pain, and IBS can be caused by psychological stress, for example. Obviously there are other possible causes of these conditions as well. Even for stomach ulcer, it is thought that stress is a significant factor. Most people with H.Pylori infection don't get ulcers, and studies show that stress is associated with development of peptic ulcers. We know for certain that cortisol causes the release of stomach acid, so it's very plausible that stress is a factor in causing ulcers.

Even for MS, stress seems to be a factor in causing relapses. It's not the only factor, as we know that lack of vitamin D and EBV are risk factors. We do know that stress reactivates EBV, so it's possible that stress causes EBV reactivation, which then infects the brain causing MS symptoms. Or it could be that some of the MS symptoms such as fatigue and depression are partially caused by stress that is unrelated to MS. There seems to be a lot of parallels with MS and severe CFS which is interesting. The diagnosis of MS seems to be pretty hit and miss...the tests seem to have pretty low sensitivity and specificity.

While I agree that doctors shouldn't automatically jump to the psychosomatic conclusion, I think they also shouldn't completely ignore it. Neither is good for patients, and from what I can tell (in the UK at least), most doctors have the balance about right. In the USA they tend to be more on the organic side, ignoring psychological factors.

It's also not true that there has not been any proven psychosomatic illnesses. It's pretty well established that headaches, back/muscle pain, and IBS can be caused by psychological stress, for example. Obviously there are other possible causes of these conditions as well. Even for stomach ulcer, it is thought that stress is a significant factor. Most people with H.Pylori infection don't get ulcers, and studies show that stress is associated with development of peptic ulcers. We know for certain that cortisol causes the release of stomach acid, so it's very plausible that stress is a factor in causing ulcers.

Even for MS, stress seems to be a factor in causing relapses. It's not the only factor, as we know that lack of vitamin D and EBV are risk factors. We do know that stress reactivates EBV, so it's possible that stress causes EBV reactivation, which then infects the brain causing MS symptoms. Or it could be that some of the MS symptoms such as fatigue and depression are partially caused by stress that is unrelated to MS. There seems to be a lot of parallels with MS and severe CFS which is interesting. The diagnosis of MS seems to be pretty hit and miss...the tests seem to have pretty low sensitivity and specificity.

I don't know if you are one of the NICE advisors or are just repeating what was said in a recent review by soneone generally regarded on here as uninformed. No uk Drs DO NOT have the Belence right. There's been so much psychotwaddle spouted on ME based on rubbish imo around catastrophisation, lack of motivation, hyperchondriasis, exercise fear, unhelpful illness beliefs and deconditioning that any ME patient as sick as someone with sjogrens or MS is treated through a prism of extreme skeptism, hostility and given inappropriate management advice. Biomedical research has been hugely underfunded and underpowered but I guess you think that doesn't matter as many stress/psychological focused health professionals seem to. I think it highly unlikely that disabling MS or ME fatigue is primarily stress or psychogenic and it's as tragedy that fatigue, when it's so disabling, has been psychologised across illness and still is.

 

[bostjan01]

What can I tell uninformed doctor that tells me I have to sort things out in my brain and that my symptoms are just psychological what abnormalities have been found in studies in CFS patients?

 

[Neunistiva]

What can I tell uninformed doctor that tells me I have to sort things out in my brain and that my symptoms are just psychological what abnormalities have been found in studies in CFS patients?

@alex3619 already answered most of this question.

Ask your doctor to read at least the intro to IOM report and a few important reserach papers that have been published since then such as the metabolic research, cytokine research and gut issues research. Alternatively they can quickly check out CDC or NIH webpages which are far from perfect but make it clear ME/CFS is a physical illness.

Seeing a psychiatrist and have them confirm you have no psychiatric illness is always helpful, but be careful when choosing a psychiatrist. Ask them a few questions before committing to being their patient.

And don't forget, you can always get a different doctor.

 

[medfeb]

What can I tell uninformed doctor that tells me I have to sort things out in my brain and that my symptoms are just psychological what abnormalities have been found in studies in CFS patients?

The article on page 23 of this journal of the New York State Academy of Family Physicians may help
http://www.nysafp.org/NYSAFP/media/PDFs/Family Doctor/Family-Physician-Winter-2018WEB.pdf

This Nature article might also help
https://www.nature.com/articles/d41586-017-08965-0