Healthcare - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: When Suffering Is Multiplied - Komaroff

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: When Suffering Is Multiplied - Anthony L. Komaroff

Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness defined predominantly by symptoms. Routine laboratory test results often are normal, raising the question of whether there are any underlying objective abnormalities. In the past 20 years, however, new research technologies have uncovered a series of biological abnormalities in people with ME/CFS. Unfortunately, many physicians remain unaware of this, and some tell patients that “there is nothing wrong” with them. This skepticism delegitimizes, and thereby multiplies, the patients’ suffering.

 

Are there findings that are replicated though?

Part of the issue might be that diagnostic criteria were too loose or n numbers too small, or failure to tame into account differences in accuracy in equipment and so forth, but as far as I know there isn't any one thing that we can point to and say that's typical of an ME patient.

Even if it were an abnormality that was found in other, better understood diseases and also in patients that did not have those other diseases but fit the criteria for ME that would be something.

If we could say not everyone who fits the criteria of ME will have this abnormality but those with this symptom profile do, that would be progress of a sort.

I know in the UK part of the BPS BS was to recommend ME patients not be tested under the guise of it not being in the patients best interest for fear testing would reinforce abnormal illness beliefs. Actually, it also conveniently served to limit our understanding of ME and discourage the use of expensive new technology to investigate further.

I'm not convinced it's wise to state

If the patient in front of a doctor who goes ahead and carries out those tests and gets a negative result then either it will reinforce the docs scepticism about pwME generally or just about that particular patient.

I'd rather see a call for more wisely chosen testing using newer and more sensitive equipment, I think.

 

Yes. But they obtained this idea from the US. My main problem with Komaroff is that he might find it easier to call out some UK psychiatrists than Professors at Harvard.

 

Agreed.

As you say I think both sets of "establishment" need to be called out.

i think in the UK, thanks to our health service, this idea that testing (to learn and understand the disease as much as help the individual) is bad because it reinforces the false belief that the person is ill has had a much bigger impact than the US.

I get the impression, and someone do correct me if I'm wrong, that thanks to the US health insurance system doctors have a slightly (depending in the healthcare cover) freer rein.

Here, unless you are quite wealthy & can afford expensive private healthcare, you get what you are given and this is driven by the likes of NICE and before that by the influence of experts like Wessely, I think.

The idea may have taken root "over there" but in the case of attitudes towards testing tackling it over here may yield better initial progress.

 

I think this was a really good comment/article from Komaroff. He's also done a lot for legitimizing this condition with his JAMA-article a few years back.

 

Or whether any of these abnormalities are in anyway other than merely correlational with the causal pathology of ME/CFS !

Having a reading that is abnormal, i.e 'out of the range' that has previously been determined as 'normal' in a disease free population, is not in itself a measure of disease, excepting of course where critical parameters are passed but then those parameters typically indicate the existence of known diseases.*

One can argue that medical knowledge is lacking and that the current appreciation of where disease commences relative to a particular measure is inaccurate, and from that go on to argue that multiple non critical abnormalities indicate interactions that in combination produce a unique disease. But we need to be clear that is not the only available line of argument.

There is also the argument that all of the abnormal readings are individually and in combination, just random correlation.

Or alternatively and perhaps more interestingly, that there is something unusual about the ME/CFS patient population which produces this collection of 'out of normal range' readings but that unusualness is only a correlate with the incidence of ME/CFS and does not in itself represent a commonality of ME/CFS pathology.

This latter point raises a challenge not just for investigations following Komaroff's perspective but also perhaps for genetic studies such as DecodeME where the study might show evidence of why the ME/CFS population is unusual, but still not answer the question of common pathology (or pathologies).

* As already noted:

 

Hopeful article, and good advice to physicians to not dismiss patients.

Discouraging, in that the horizon for understanding and treatment is ever receeding.

I think that at the very least finding similar abnormalities in a number of pwME indicates something physiological is involved, and that
ME is not an imaginary ailment.

Dr. Komaroff explains the problem with regular testing very well. And, that physicians know there are more tests they could do.

As @Invisible Woman says, testing in a government funded health care system is "you get what you are given". That's the case as well in Canada.

Aside from minimal testing, another issue is lack of biomedical specialists. The way the system is set up for GPs doesn't afford them or their ME patients sufficient time to deal with this.

 

Playing at being a Devil’s Advocate:

At present we do not have the evidence to unambiguously say whether ME is a purely biomedical condition or if it is psychogenic: a condition theoretically could be psychogenic yet display physiological abnormalities.

However after decades of looking the bio psychosocial lobby have failed to demonstrate any reliable psychological abnormalities and their preferred psychological and behavioural treatments have been demonstrated to be ineffective and for many harmful. This harm seems to be linked to increasing levels of activity, something that the psychological lobby, contrary to the evidence insists is safe. So currently the predictions of the psychogenic advocates are just plain wrong, though this does not allow us to conclude that all psychogenic theoretical approaches would fail, just that all that have so far been examined have failed.

In contrast we have a number of physiological abnormalities being identified with increasing reliability associated with ME. And though we lack an agreed theoretical underpinning, it seems that the proponents of a biomedical approach are much nearer making predictions that turn out to be accurate, not least that over exertion makes the condition worse and that restricting activity minimises any worsening of the condition.

So currently it is only rational to focus on the biomedical aspects of the condition, and abandon completely the current psychogenic research and related treatments. That is not to say it is impossible there are psychological causal factors, just that on the basis of our current knowledge this seems an ‘unreasonable fancy’ and pursuing them a waste of time and money.

[Added - there are obvious psychological issues at play in the maintenance of ME, that is the apparent inability of the bio psychosocial advocates, both researchers and clinicians to step back from their belief in the condition being incontrovertibly psychogenic and recognise the failings in their research methodologies and their inability to accept the reality of the harms it causes. Psychological intervention for these researchers and clinicians to prevent further harms for their patients might be a useful line of research.]

 

I think that there are different aspects of ME to be discussed but they are often mixed in together. I will try to explain what I mean but it is clearer in my head than the words I can find.

I propose we take it as a given that the vast majority of people who say they have ME actually have a medical problem and want to get better and the idea that ME is caused by patients subconsciously wanting to be ill for the benefits of the sick role is false.

If we accept that then something is wrong with the body in people with ME. There is no need to prove it by replicated research studies.

Research studies are designed to find out WHAT is going wrong and that is where the results need to be studied and replicated. Similarly, for a diagnostic test we should scrutinise any trial in the same way we would do for a BPS trial. We do not need a trial to show we have a disease, all that is needed is to believe the patient. This is not unprecedented for instance medicine does not demand a positive test before someone is believed when they claim be having migraine attacks.

Th question is whether there is a psychogenic cause for our symptoms and that has been studied for thirty years with no credible proof and all symptoms which do not easily suggest psychological aetiology ignored.

By contrast the search for a biomedical cause has been seriously underfunded and some of the possible culprits were not even known thirty years ago.

The simple truth is we have a disease which exercise makes worse.

 

@Peter Trewhitt @Mithriel

Absolutely.
Three decades of over funding, and catering to the BPS model has not proven ME is psychological.

Whereas, science has shown a number of physical abnormalities with researched pwME.

If my recall is correct, some physical abnormalities found decades ago were dismissed, denied funding etc. One that comes to mind is the use of the impedance cardiograph to study OI. I can't include the link right now; will find it later.

 

• 
  It's my understanding progress in this area, of course as well as many others, was delayed:

2003 Aug;326(2):55-60.
doi: 10.1097/00000441-200308000-00001.
Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome
Arnold Peckerman 1, John J LaManca, Kristina A Dahl, Rahul Chemitiganti, Bushra Qureishi, Benjamin H Natelson
Affiliations

• PMID: 12920435
  
• DOI: 10.1097/00000441-200308000-00001

Abstract
Background: Findings indicative of a problem with circulation have been reported in patients with chronic fatigue syndrome (CFS). We examined this possibility by measuring the patient's cardiac output and assessing its relation to presenting symptoms.

Methods: Impedance cardiography and symptom data were collected from 38 patients with CFS grouped into cases with severe (n = 18) and less severe (n = 20) illness and compared with those from 27 matched, sedentary control subjects.

Results: The patients with severe CFS had significantly lower stroke volume and cardiac output than the controls and less ill patients. Postexertional fatigue and flu-like symptoms of infection differentiated the patients with severe CFS from those with less severe CFS (88.5% concordance) and were predictive (R2 = 0.46, P < 0.0002) of lower cardiac output. In contrast, neuropsychiatric symptoms showed no specific association with cardiac output.

Conclusions: These results provide a preliminary indication of reduced circulation in patients with severe CFS. Further research is needed to confirm this finding and to define its clinical implications and pathogenetic mechanisms.


https://pubmed.ncbi.nlm.nih.gov/12920435/

( I can only find the abstract right now.)

As well, pages 3 to 7 and 18 in "A Clinical Case Definition and Guidelines for Medical Practitioners, An Overview of the Canadian Consensus Document "outlines abnormalities found: https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf

ETA: the CCC was published in 2003. The Overview was printed in Canada in 2006.