Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

[Arnie Pye]

I think ME patients are mostly ignored because they are considered to be hypochondriacs - with nothing wrong with them at all.

If doctors decide a patient is a hypochondriac they probably don't tell the patient. They just code the patient's records to alert other doctors. The patient has to guess why they are treated with derision and are given short shrift for every invisible condition they see a doctor with.

So, from the point of view of the patient, they have been tried, and sentenced in a court case they weren't involved in and didn't know was even happening, with a judgement made that they can't appeal, and the sentence is a whole-life sentence.

Based on the behaviour of doctors towards me throughout my life I was classified as a hypochondriac and attention-seeker in my teens. I am now nearly 60. And I am still judged by the opinion of whichever doctor I saw over 40 years ago when I was a teenager. How is this ethical?

 

[Peter]

"By promoting GET/CBT as the only supposedly evidence based treatments, GP's assume that it's a psychosomatic condition and either offer antidepressants or pwme are being diverted off to therapist run clinics and may never even get past first base in trying to get consultant level diagnostic or symptomatic treatment services."

yep, Important point. Though there aren’t any treatments available, one could imagine that there are some sort of symptomatic treatment available that doctors should know of. But I’m not sure about this, - if there really are any valid drugs that actually works and are acceptable using in the long run? In theory some patients could probably benefit a litte symptom wise from paracetamol and maybe some sort of sleeping medication, but the problem is that you can't do that forever, so its not an acceptable option. My impression is that there are very few alternatives, and patients are very much left to pacing and enduring.

But as Trish says, when this endless promoting of GET/CBT continues, the GP´s don’t even get to the question of symptom relief. Not talking generally of all GP`s, but it's reasonable to assume that this is the reality in far to many cases. When there are only a few alternatives for proper symptom relief, you could argue that it won’t change the reality if the GP or other docs approach the patient so or so, but in principle it is obviously not acceptable dismissing patients cause they imagine that blatantly oversold GET/CBT are solutions. In principle patients are denied proper medical services.

 

[Jonathan Edwards]

Surely this much be unethical!

Absolutely, but there is nothing in the NICE guidelines that says PWME must be ignored as hypochondriacs. And it is nothing to do with the 'psychosomatic' debate since if you re a hypochondriac you don't actually have an illness. It is just an extension of the usual laziness that has become acceptable amongst doctors who do not have to tout for business (e.g. NHS) that allows them to ignore anyone who complains a lot. And of course that includes people like me who are hypochondriacs for thinking they have prostate cancer just because they know about a test. Fortunately I knew enough to get my cancer sorted but so many people don't.

I am not disagreeing that people with ME get a raw deal in the UK. But I suspect they get a raw deal everywhere and I don't think it has a lot to do with NOCE guidelines. It has to do with the 'all in the head' approach but nobody is going to get anywhere trying to influence the professional debate on this with a 'mental/ physical' dichotomy because the professionals do not actually make that dichotomy and nothing in terms of evidence has changed things. What has changed in the debate is a wider appreciation of the flaws in the evidence for certain treatments.

 

[Jonathan Edwards]

when this endless promoting of GET/CBT continues, the GP´s don’t even get to the question of symptom relief.

This I very much agree with. So the key debate is about whether it is legitimate to continue with these. It really doesn't matter what theory they carry along with them. The problem is that they provide a means for GPs to offload patients on to cheap therapists and wash their hands of the problem. If CBT and GET were based on a theory of activated microglia, or persistent enterovirus the problem would be the same.

 

[Robert 1973]

But whether ME has served as a quintessentially psychosomatic disorder or not I am not sure and am not sure it matters. We do not know what ME is. The useful debate is not about that. It is about whether CBT and GET are useful treatments.

I understand your point but I do think it matters:

First, I’m not convinced that there is such a thing as a psychosomatic disorder, or that the diagnosis is ever helpful to patients. History suggests that it is used as a stopgap until a proper medical explanation is established. If the example of ME/CFS can be used to help to bring an end to this practice it would be positive.

Second, if treatments for psychosomatic disorders are capable of being effective, then they must also be capable of causing harm. Unlike other diagnosis, there seems to be a false assumption among some psychiatrists that prescribing treatments for psychosomatic disorders to people who do not have psychosomatic conditions is without risk. I believe that most ME patients have suffered mentally from the assumption that ME is a psychosomatic illness, or whatever synonym the psychiatrists want to dress it up as. And the fact that this mental harm is being caused by those whose primary concern is supposed to be for people’s mental well-being makes it even worse.

It is important to note that my second point does not imply any prejudice about mental illness (which is the strawman argument that SW et al normally respond with). In fact, it is the opposite of prejudice: it is treating mental illness the same as any other type of illness. You do not treat someone for cancer unless there is reliable evidence 1) that they have cancer, and 2) about the efficacy and relative safety of the treatment. The same standards should be applied in psychological medicine – both practice and research. Diane touches on this, but doesn’t quite make the arguments as carefully as I would have liked, and I wonder if she has left herself vulnerable to the strawman counterattack from SW et al.

One other minor point I would make is that Diane writes:

Second, psychiatrists who originally established the UK’s prominence in this area are, quite rightly, engaging in vigorous professional and public debate at this time.

Sadly, I don’t see them engaging in much scientific debate with their academic critics – apparently because they have no answers to the questions they are being asked.

 

[DokaGirl]

If memory serves, the NHS guidelines make a point of advising against doing some particular tests for ME patients: tilt table, NK cells etc.

This in essence denies biomedical care, and prevents medical understanding of this disease as organic.

If these tests were done, medical professionals would hopefully see that pwME are not raving hypochondriacs.


From the article by Dr. Lily Chu, MD; a survey of 623 respondents in reference to meetings with the FDA in 2013:

http://iacfsme.org/portals/0/pdf/FDA-AugustFinalReportforUS-Version2.pdf

"Testing: We asked about five tests that ME/CFS specialists commonly order to assess their patients – natural killer cell activity, repeated cardiopulmonary exercise test, brain imaging, neuropsychological testing, and tilt table. For each test, about 50% of respondents had never had the test before partly due to cost, insurance coverage, or physician ignorance and resistance to ordering a test. Of those who had any of the five tests, 66% had at least one abnormal result. For natural killer cell activity, 73% noted an abnormal result; for tilt table testing, 77%."

From the Conclusion:

"3). Contrary to the idea that all tests are normal in CFS patients, we found that 66% of our respondents had at least one abnormal test out of five commonly given to patients by ME/CFS specialists. Such tests can be used by pharmaceutical companies to objectively assess symptoms for study inclusion criteria or as outcomes measures."

 

[Andy]

If memory serves, the NHS guidelines make a point of advising against doing some particular tests for ME patients: tilt table, NK cells etc.

The current guidelines say

1.2.2.4 Tests for serum ferritin in adults should not be carried out unless a full blood count and other haematological indices suggest iron deficiency.

1.2.2.5 Tests for vitamin B12 deficiency and folate levels should not be carried out unless a full blood count and mean cell volume show a macrocytosis.

1.2.2.6 The following tests should not be done routinely to aid diagnosis:

• the head-up tilt test
  
  
• auditory brainstem responses
  
  
• electrodermal conductivity.
  

1.2.2.7 Serological testing should not be carried out unless the history is indicative of an infection. Depending on the history, tests for the following infections may be appropriate:

• chronic bacterial infections, such as borreliosis
  
  
• chronic viral infections, such as HIV or hepatitis B or C
  
  
• acute viral infections, such as infectious mononucleosis (use heterophile antibody tests)
  
  
• latent infections, such as toxoplasmosis, Epstein–Barr virus or cytomegalovirus.
  

https://www.nice.org.uk/guidance/cg53/chapter/1-Guidance#diagnosis

 

[Jonathan Edwards]

If memory serves, the NHS guidelines make a point of advising against doing some particular tests for ME patients: tilt table, NK cells etc.

This in essence denies biomedical care, and prevents medical understanding of this disease as organic.

If these tests were done, medical professionals would hopefully see that pwME are not raving hypochondriacs.

I am afraid they wouldn't. The current NICE guidelines is very reasonable on these tests. There is no need to do tilt table tests routinely and I am sceptical they are actually very useful. They don't actually prove what is causing orthostatic intolerance. NK cells are a waste of time. It is now pretty clear that there is no consistent finding on testing - and certainly nothing that would aid diagnosis in an individual.

The other tests Andy flags up look to be dealt with appropriately. I think an antinuclear factor might be useful but that is not specifically discouraged as far s I know.

None of these tests is going to show that a PWME has an 'organic disease' or not hypochondriacs. If a B12 came out low it would indicate B12 deficiency, not that ME is organic.

 

[Arnie Pye]

From Andy's quote in post #27 :

1.2.2.4 Tests for serum ferritin in adults should not be carried out unless a full blood count and other haematological indices suggest iron deficiency.

1.2.2.5 Tests for vitamin B12 deficiency and folate levels should not be carried out unless a full blood count and mean cell volume show a macrocytosis.

Looking at Serum Iron, Serum Ferritin, Transferrin Saturation %, and MCV (Mean Cell Volume), these are likely to be low in iron deficiency anaemia and high in B12 deficiency anaemia.

Looking at Total Iron Binding Capacity (TIBC) and Transferrin, these are likely to be high in iron deficiency anaemia and low in B12 deficiency anaemia.

Looking at Red Blood Cell Size, these are likely to be small in iron deficiency anaemia (microcytosis) and large in B12 deficiency anaemia (macrocytosis).

Source - table at the bottom of this link : http://www.irondisorders.org/Websites/idi/files/Content/854256/HowdoIknow_Anemia__Converted_.pdf

If someone has both conditions i.e. has iron deficiency AND B12 deficiency (which frequently occurs in patients with hypothyroidism and in Pernicious Anaemia) then doing an FBC (Full Blood Count) will often show normal results in many of the parameters tested.

 

[Jonathan Edwards]

First, I’m not convinced that there is such a thing as a psychosomatic disorder, ... If the example of ME/CFS can be used to help to bring an end to this practice it would be positive.

I agree but how do we take ME/CFS out on present evidence if we have none? If CBT and GET for ME are withdrawn that will knock the MUS programme but I rather doubt it will impact on the belief in psychosomatic illness.

I agree if the debate moves forward to acknowledge that there is no reason to consider ME as psychosomatic then that is a major achievement. Where I think Diane goes off track is in bringing in the opinion of the IOM. This is just an opinion. It is not new evidence. It may reflect a shift in view already present in the USA. I don't see it as an argument that can be used to move things forward in the UK particularly. Perhaps on a political front, but not a scientific or ethical one.

there seems to be a false assumption among some psychiatrists that prescribing treatments for psychosomatic disorders to people who do not have psychosomatic conditions is without risk.

Has anybody said this or intimated it? My understanding is that the psychiatrists are assuming that they are treating people with psychosomatic or 'BPS' disorders. If you asked them if it was OK to give their treatment to people with cancer they would say of course not.

I do agree that there is an assumption that therapist-delivered treatments do not cause harm when given to the people they are intended for.

Sadly, I don’t see them engaging in much scientific debate with their academic critics – apparently because they have no answers to the questions they are being asked.

Again I would agree. They are not in fact engaging in debate at all. They are stonewalling and throwing brickbats and badgering people supposed to be maintaining independent standards etc. but not debating.

 

[Hoopoe]

Where I think Diane goes off track is in bringing in the opinion of the IOM. This is just an opinion. It is not new evidence. It may reflect a shift in view already present in the USA. I don't see it as an argument that can be used to move things forward in the UK particularly. Perhaps on a political front, but not a scientific or ethical one.

Bringing in the IOM is an appeal to authority. However, the view that it's psychosomatic is also based on nothing but some self proclaimed experts saying it is so. As Diane points out, the IOM is considerably more authoritative than any of the people saying ME/CFS is psychosomatic.

I don't know how others view the IOM report but to me it seemed that someone finally spoke out against the insanity of psychosomatic model. It seemed to give others the courage to act and do something useful.

PS: I'm not exaggerating. The Wessely paper from 1989 proposes a psychosomatic model and claims CBT/GET will help without being able to cite any studies to back these opinions up. The belief came first. The later CBT/GET studies were only an attempt to prove these beliefs.

 

[Jonathan Edwards]

If someone has both conditions i.e. has iron deficiency AND B12 deficiency (which frequently occurs in patients with hypothyroidism and in Pernicious Anaemia) then doing an FBC (Full Blood Count) will often show normal results in many of the parameters tested.

I agree there are complexities to interpreting blood counts like this but I do not see what this has to do with a guideline on ME. People with established ME may develop vitamin and mineral problems but I don't think that is what the guideline is relating to - it is under the diagnostic section I think.

We can quibble for ever about which tests should be routine but I don't think these things constitute an ethical issue with 'denial of access to medical treatment'. Exactly the same penny-pinching restriction on tests comes up for lots of 'medical' illnesses. I suspect the guidelines for rheumatoid arthritis say not to do certain tests, and probably they should say that more. My own view is that GPs shouldn't bother with tests much and should get a specialist clinical opinion. As you say, so many tests do not rule out what they are supposed to rule out. But again, the absence of specialist clinical opinions is a matter for service provision, not NICE. I don't think the NICE guidelines discourage specialist referral.

 

[Arnie Pye]

I agree there are complexities to interpreting blood counts like this but I do not see what this has to do with a guideline on ME. People with established ME may develop vitamin and mineral problems but I don't think that is what the guideline is relating to - it is under the diagnostic section I think.

Yes, it is in the diagnosis section. But if an FBC is one of the few tests permitted in people suspected of having ME, and an FBC can so easily be misinterpreted if the patient has multiple conditions then it matters a lot. I realise that fixing an iron deficiency and a B12 deficiency won't cure people with ME, but it will make people feel better than they did, and that is important to every patient whatever their health conditions might be.

 

[JohnTheJack]

The biopsychosocial view of ME is quite different from the typical account of 'psychosomatic' complaints like childhood abdominal pain. OK the BPS people like to publish in a journal of psychosomatic research but I don't think ME was ever quintessentially psychosomatic. The idea is that unhelpful beliefs lead to behaviours that give rise to symptoms because of deconditioning. In childhood abdominal pan the pain is supposed to arise from emotional conflict or something.

I think that's an important point. The BPS model is not 'psychosomatic' or 'psychological' as generally understood. ME is not seen as a product of an underlying emotional/psychological problem. Indeed such a problem would actually exclude a diagnosis of ME.

The BPS crowd have in a sense created a whole new genre, where the belief itself is the illness.

It reeks of one of those 'clever' answers where a long-standing problem is solved by a superficially brilliant, neat solution that when examined at all is clearly just nonsense.

 

[Robert 1973]

Has anybody said this or intimated it? My understanding is that the psychiatrists are assuming that they are treating people with psychosomatic or 'BPS' disorders. If you asked them if it was OK to give their treatment to people with cancer they would say of course not.

Given the history of people being wrongly diagnosed with psychosomatic illness, both historically with illnesses which were previously misclassified and currently whith diagnoses that are missed, I am guessing that even those who believe in the existence of psychosomatic illness would concede that the diagnosis, because it cannot be made positively, will always include a some people whose illness is not psychosomatic. The only debate would seem to be about what the ratio is.

If psychiatrists would concede that their treatments could be harmful to people who do not have psychosomatic illness, then surely they would have to concede that they must be exposing patients to potiential harm by prescribing psychosomatic treatment to anyone.

The question then would be how accurate does the psychosomatic diagnosis need to be in order for the treatment to be considered ethical? What would be the maximum threshold of error (% of misdiagnosed parients) in order for it to be considered ethical to subject misdiagnosed patients to potientally harmful treatments? (What do you think @Diane O'Leary?)

This is separate from the question of whether or not the treatments are potentially harmful to people who have the correct diagnosis.

[edit – typos]

 

[DokaGirl]

@Jonathan Edwards

Thank you for your reply.

Yes, we need to know the cause of ME; for example tilt table testing may show abnormalities in ME, but not the cause.

Of course, first we need to see there are organic abnormalities.


The IOM/NAM 2015 report has indicated sufficient evidence for:

PEM, page 86 of the full report: " There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS from other conditions."

Orthostatic Intolerance, page 119 of the full report: " Sufficient evidence indicates a high prevalence of orthostatic intolerance in ME/CFS, as measured by objective heart rate and blood pressure abnormalities during standing or head-up tilt table testing or by patient-reported exacerbation of orthostatic symptoms with standing in day-to-day life. These findings indicate that orthostatic intolerance is a common and clinically important finding in ME/CFS."

NK Cells, page 152 of the full report: "The committee literature review yielded data demonstarting poor NK cell cytotoxicity (NK cell funciton, no number) that correlates with illness severity in ME/CFS patients and could serve as a biomarker for the severity of the disease, although it is not specific to ME/CFS.

Conclusion: Sufficient evidence supports the finding of immune dysfunction in ME/CFS."

http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx


I think the 2015 IOM/NAM report proved there are some consistent enough abnormalities to view ME as organic, and to pave the way for more biomedical studies. The committee did say ME is not a psychological condition.

If we stick to the idea there is no proof ME is organic, ie. biomedical tests show nothing, or results are not sufficiently consistent, we may be shackled indefinitely with the absurd idea that millions around the world have mass hysteria lasting decades.

 

[DokaGirl]

I think that's an important point. The BPS model is not 'psychosomatic' or 'psychological' as generally understood. ME is not seen as a product of an underlying emotional/psychological problem. Indeed such a problem would actually exclude a diagnosis of ME.

The BPS crowd have in a sense created a whole new genre, where the belief itself is the illness.

It reeks of one of those 'clever' answers where a long-standing problem is solved by a superficially brilliant, neat solution that when examined at all is clearly just nonsense.

I thought several papers have tried to pin down mistreatment, or psychological trauma as the cause of ME, hence an underlying emotional/psychological problem.

 

[Hoopoe]

I found the tilt table test useful because it helped me make sense of some of my symptoms and helps me stick to the treatment. My feeling is that orthostatic intolerance is probably hugely underdiagnosed. Some of those frustrating cases with vague nonspecific symptoms are going to be cases of mild orthostatic intolerance. I think there should be an effort to introduce the wall leaning test into clinical practice, if at all feasible.

Some of the people arriving in the emergency room with tachycardia, chest pain, anxiety and a bunch of other symptoms that would be attributed to anxiety are simply having bad orthostatic intolerance. What they need is rehydration. I also wonder whether inflatable anti-shock trousers would be useful. In theory they should help instantly.

 

[JohnTheJack]

I thought several papers have tried to pin down mistreatment, or psychological trauma as the cause of ME, hence an underlying emotional/psychological problem.

My understanding is that they have tried to suggest certain personality types and life experiences are linked to developing ME and that trauma can 'trigger' the illness.

 

[Esther12]

"Debate about ME/CFS management must now be focused on the risk of denying access to biomedical care for patients suffering from serious disease"

I don't think that this is right, at least, not until we have more useful biomedical care. During PACE patients were meant to be provided with symptomatic drug treatments as a part of SMC - that doesn't do anything to address the problems with PACE. The CBT/GET crew could easily make some minor adjustments to how they treat patients to provide some more biomedical care while leaving the key problems with their approaches in place, and I don't think patients would benefit much from that.