A substantial proportion of consumers now use healthcare options known as so-called alternative medicine (SCAM). But why? This study aimed to understand the processes and decisional pathways through which chronic illness patients choose treatments outside of regular allopathic medicine.
It employed Charmaz’s constructivist grounded theory methods to collect and analyze data. Using theoretical sampling, 21 individuals suffering from chronic illness and who had used SCAM treatments participated in face-to-face in-depth interviews conducted in Miami/USA.
Seven overarching themes emerged from the data to describe how and why people with chronic illness choose SCAM treatments:
- influences,
- desperation,
- being averse to allopathic medicine and allopathic medical practice,
- curiosity and chance,
- ease of access,
- institutional help,
- trial and error.
The author concluded that in selecting treatment options that include SCAM, individuals draw on their social, economic, and biographical situations. Though exploratory, this study sheds light on some of the less examined reasons for SCAM use.
There already is a plethora of research on the reasons why people elect to try SCAM. Our own systematic review of 2011 was, in my view, more informative. Here is the abstract:
The aim of this review is to summarize the published evidence regarding the expectations of so-called alternative medicine (SCAM) users. We conducted electronic searches in MEDLINE and a hand search of our own files. Seventy-three articles met our inclusion criteria. A wide range of expectations emerged. In order of prevalence, they included:
- hope to influence the natural history of the disease;
- disease prevention and health/general well-being promotion;
- fewer side effects;
- being in control over one’s health;
- symptom relief;
- boosting the immune system;
- emotional support;
- holistic care;
- improving quality of life;
- relief of side effects of conventional medicine;
- good therapeutic relationship;
- obtaining information;
- coping better with illness;
- supporting the natural healing process;
- availability of treatment.
It is concluded that the expectations of SCAM users are currently not rigorously investigated. Future studies should have a clear focus on specific aspects of this broad question.
As our conclusion stated, the issue is too broad to be easily researchable. The question might need to be narrowed down. And even then, I ask myself, what might such investigations, even if done well, amount to? In what way would the results of such studies benefit anyone? How would they improve the healthcare of the future?
Perhaps someone can help me by suggesting some answers to these questions?
27 Responses to Why do chronically ill patients use so-called alternative medicine?
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I can think of one more important reason why people resort to alternative treatments for chronic conditions: personal experience – either other people’s experiences (maybe this is also meant by ‘influence’ at the top of the first list) or one’s own past experience.
And it is easy to see why especially chronic conditions feature prominently in this: many people with a chronic condition do not simply accept their condition for what it is, but keep on trying things, sometimes lots of different things, sometimes for years on end.
Then if, after many more months or even years, and for whatever reason, the condition shows improvement or even goes away completely, the illusion is almost inescapable that the last thing they tried was indeed responsible for this development. After which these happy (ex-)patients more often than not become quite vocal advocates for that particular ‘cure’.
This ‘I -have been-suffering-for-years-and-then-I-found-treatment-X-that-really-worked!’ is in fact one of the narratives I hear most often when discussing alternative treatments with people.
It can come from complete desperation when conventional medicine has failed, or if the doctor refuses to recognise the condition, eg. in ME.
Especially if conventional medicine starts promoting SCAMs such as the Lightening Process or Mickel / Reverse nonsense.
This in itself is not enough for people to start consulting alternative practitioners. An essential part is that those alternative practitioners tell people that they may have a solution where real doctors can’t offer one. This is usually not the case, although a practitioner’s elaborate personal attention for a patient often elicits a placebo response, making a patient feel better.
Specifically about ME (or chronic fatigue syndrome, CFS, as it is more commonly called): it is a syndrome, meaning that there is no known cause, diagnostic test, or treatment – and that it is diagnosed by the totality of symptoms, severe chronic fatigue being one of those symptoms.
Unfortunately, many conditions have severe fatigue as a symptom (Covid-19, anyone?), so real doctors are usually reluctant to diagnose ME, precisely because it is a chronic condition that condemns patients to long-term suffering without any real prospects of improvement.
It is very much in the patient’s (and even the doctor’s) interest that other possible causes for fatigue are ruled out first before finally deciding that, yes, the patient may be suffering from ME.
Patients are not really helped when an alternative practitioner ‘diagnoses’ ME and then proceeds to sell the patient all sorts of treatments and nostrums. Then again, an alternative practitioner’s diagnosis of ME is probably wrong, with the patient most likely recovering after all – at which point the practitioner of course claims success and the patient is turned into a True Believer … Which is sadly ironic. And oh, many real cases of ME eventually resolve as well in the long run, which only serves to make it all even more complicated.
Richard,
I was taught a different definition of syndrome, which is that it is a collection of symptoms and signs which tend to appear together and therefore constitute a distinct diagnostic entity. Many syndromes have well-established causes, diagnostic tests and treatments, the Acquired Immune Deficiency Syndrome being a well-known example.
Other than that I more-or-less agree with everything in your post. Myalgic encephalomyelitis (a very misleading name) seems to be what is left after other diagnoses have been ruled out, and I am still unclear whether it really exists, particularly as no consistent pathological features have ever been identified. Mercifully as an oncologist it is something that I have never had to deal with – from what I have observed, a cancer diagnosis tends to result in other problems receding into the background, and of course fatigue is a common symptom of malignancy as well as a consequence of many cancer treatments.
It seems to me that after exhausting physical causes of fatigue the next step is to look for psychological causes, though that in itself can be a whole new can of worms. Furthermore, lack of physical exercise can in itself be tiring, so a period of bed-rest for whatever initial reason can initiate a process of positive feedback whereby muscle wasting and other physiological changes resulting from inactivity (including bad habits) can make it harder and harder to break the cycle and return to normal living.
The extreme example of this is Resignation Syndrome – seen in the children of immigrant families only in Sweden where the children slide into a catatonic state.
Hi Lenny,
I imagine you’ve already seen it reviewed recently, but in case not, there is an excellent book (just released) by Dr Suzanne O’Sullivan called The Sleeping Beauties, where the author travels to Sweden (among other places) to meet the refugees suffering from Resignation Syndrome. Her two previous books, “It’s All In Your Head” and “Brainstorm”, are also well worth reading, especially the former, where she tells the stories of several of her patients presenting with all sorts of physical symptoms, the cause of which often turn out to be psychosomatic. I’d highly recommend it – it’s fascinating and also beautifully written.
Alex
Hi Alex
I did read the reviews of the book but I’ll have to look up those others – I need something to read at the moment.
@Dr Julian Money-Kyrle
And I think you are right, thank you for the correction! Still, the WP page says that “When a syndrome is paired with a definite cause this becomes a disease”, suggesting that the term syndrome is used for a collection of symptoms when no cause is (yet) known.
Your response is exactly why folk with ME do seek help elsewhere. There are many physical abnormalities found, but not using the normal battery of tests.
A refusal to recognise a patient is ill (there’s nothing wrong with you, it must be psychological) is exactly why we loose all trust in conventional medicine. Does medicine know everything? Can all research cease?
Whatever happened to the word ideopathic?
It took a wee while for prions to become recognised.
ME may not be the correct name, but neither is fatigue a symptom. The symptom is abnormal fatiguability.
A completely different thing.
peggy-sue,
Yes indeed. Dr Julian Money-Kyrle often states his opinion about things of which he is largely ignorant. He’s a poster child of the ipse dixit.
In complete contrast, Dr Paul Chrisp, director of the Centre for Guidelines at NICE, said:
“ME/CFS can cause profound, long-term illness and disability, and much of the distress surrounding it is caused by difficulties in recognising, acknowledging and accepting the condition and its impact. This has been compounded further by a lack of effective treatments, wide variation in access to services, and by controversy over the use of graded exercise therapy and CBT that has served only to alienate many people with ME/CFS and in some cases undermine the confidence of those caring for them.”
https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
@peggy-sue
This is very interesting. Could you elaborate on what these physical abnormalities are? And why these are not found in normal tests? And by which means these abnormalities are found instead?
Also note that the problem with ME/CFS is not that there are no symptoms, but actually the opposite: there are often several different symptoms, which may very well stem from other conditions than ME/CFS. Those other conditions have to be ruled out first before a more or less definitive diagnosis can be made,
Faith and hope.
They lost faith and hope in the medical realm thus they put their faith and hope outside the medical realm.
Because CON-med ( conventional medicine ) doesnt cure chronic disease. They put people on “life support” where they have to take some expensive drug that suppresses some symptoms causing other “side effects”. No one wants to live that way the rest of their life.
Roger
Oh dear. Another PRATT – Point Previously Refuted A Thousand Times
Your fallacy has been explained to you many times previously. Why do you persist in trying to make it? Oh yes. I know why. Because homeopaths willfully ignore anything which might contradict their quasi-religious faith in the magic powers of shaken water. You and Dullman are particularly egregious examples of this.
Um, isn’t the fact that it can’t be readily cured the very definition of ‘chronic disease’?
Recommended by NICE (the National Institute For Health, Clinical Excellence and iffy Chinese traditions like Accupuncture).
Thank-you for your interest Richard.
There has been a ME-pedia site set up by citizen scientists which contains links to studies and pathophysiology.
https://me-pedia.org/wiki/Myalgic_encephalomyelitis.
There is a section on notable studies. I think you will find it all properly referenced.
@peggy-sue
Thank you for the link. I haven’t had time yet to check things out in-depth, but most of the information seems quite OK, and in line with the WP page on the subject — although I am always rather wary when encountering this kind of Wikipedia clones, as they regularly tend to have an agenda and biases that extend beyond providing neutral information.
Anyway, I shall take a closer look some time this weekend, and let you know what I think.
I do understand your reticence. I hope you will find the information of interest and I really appreciate you taking some time over it.
There is still a great deal about it unknown.
There is one test, which demonstrates the effects of the disease very clearly; the 2-day CPET testing. However, it is very dangerous for the sufferer to perform.
OK, I spent some more time perusing the ME wiki pages, and apart from the information being rather more extensive than on the single WP page, I see only relatively minor differences with regard to diagnostic tests (e.g .the 2-day CPET test you already mentioned)(*), and no real differences at all when it comes to treatments.
To its credit, there are no references to alternative diagnostics/treatments (apart from empty page stubs), something that is often a big problem with information about chronic, unexplained conditions.
Anyway, not being a doctor, I can’t really say any more about this, other than that the symptoms are as real as they are debilitating, and always merit serious investigation by any physician who is consulted by someone with these symptoms. You may have a good point that not enough doctors take this serious enough – then again, as you can see by the sheer amount of information on the ME wiki pages alone, you can’t expect every doctor to be up to speed on all the latest information on this very complicated and elusive condition.
But no doubt, there will also be doctors who dismiss ‘difficult’ cases like this, for whatever reason they might have. Doctors are after all humans too, and some will be plain rude or make more mistakes than others. This is of course no excuse, but an unfortunate fact of life.
*: Maybe this is obsolete again already, but I also stumbled upon this bit of news about a possible biomarker for better diagnosis: https://shorts.blogs.bristol.ac.uk/2020/02/02/what-does-the-recent-blood-test-mean-for-cfs-patients/
I don’t have the time to look into this more in-depth, but should you be involved in maintaining or contributing to these ME pages, you might want to check this out further.
I really appreciate the time and trouble you have taken over this, Richard. I am aware of the work being done by Ron Davies – his son is very severely ill. Ron is desperate to try to find answers.
There are currently no treatments. And very little known.
But that does not mean it is psychosomatic, which is only an unproven, theoretical proposition, harping back to Freud.
It does mean it is currently ideopathic.
I am not involved with maintaining those pages, my brain is too foggy, but I trust the people who do, many of whom are scientists. If they find something wrong, they correct it.
@ peggy-sue,
“Idiopathic chronic fatigue (ICF) … is fatigue of unknown origin, persisting or relapsing for a minimum of six consecutive months, and failing to meet the criteria for chronic fatigue syndrome.”
https://en.m.wikipedia.org/wiki/Idiopathic_chronic_fatigue#Diagnosis
😀 The BPS school of (lack of) thought lot have cornered and reworked the meanings of nearly every name and acronym going.
Yup, that’s F 48.8 The “purely” psychological kind of fatigue. Perhaps burnout.
Which bears no resemblence to ME (G 93.3)
I was using the word ideopathic in its original, medical manifestation.
@peggy-sue
That is indeed impossible to tell until actual causes are established. But even if it were psychosomatic, that would not change much in my opinion: the symptoms are very real, and people suffer. The fact that cognitive or other psychological therapy doesn’t really help may point in the direction of a more physical cause, but I think it would be unwise to neglect or even completely close down on any research in the psychological direction – if only because it may at the very least help sufferers cope with the situation.
Before attracting your ire, I should maybe clarify this with something that I am working on: ‘electromagnetic sensitivity’. Running a business in (among other things) biomedical electronics, I am very interested in this phenomenon, and I also did some preliminary tests(*) with people who claim to be sensitive to electromagnetic fields. Test results were very clear: there was no correlation whatsoever between the symptoms of these people and the presence of electromagnetic fields.
The problem is that the suffering is real: these people really feel awful a lot of the time, and more so if they think they’re exposed to electromagnetic fields. So even though the causes of their symptoms are unknown, they should definitely be taken seriously, and that includes a psychological angle that should be addressed. Because not only do these people suffer, they sometimes resort to very radical measures to avoid ‘radiation’, with profound, detrimental effects on all aspects of their life.
Admittedly, all this is still quite different from ME/CFS, but I try to illustrate that even with unexplained conditions, people’s symptoms and suffering should always be taken seriously – but also that psychological aspects should never be ruled out until actual causes are established. Because also investigating possible psychological causes does not mean that people are not taken seriously. Anyone dismissing the latter as ‘fake complaints’ or ‘hysteria’ or the likes should be reprimanded and shown the error of their ways – more so if they are doctors or therapists.
*: I am planning more rigorous tests, and find a way to show these people that they are wrong about the cause of their symptoms, so that they can at least stop avoiding ‘radiation’ and return to a more normal life. This will probably not be easy … and not being trained as a doctor or therapist, I can only address the simple, technical side, i.e. take measurements and look for correlations with reported symptoms.
Psychosomaticism has not been proven to be any real phenomenom. There are a few anecdotal reports only. Citing the flight-fight response is disingenuous.
It’s all based on Freud, and all we can gain from Freud is recognising how screwed up he was.
My partner is an EMC engineer. We have discussed EMC sensitivity and we cannot think of any mechanism by which it might operate. But we are ignorant about quantum stuff. Just remember, correlation is not causation. 😉
Hm, I think we misunderstand each other here. People can absolutely evoke all sorts of symptoms without any physical cause.
Did I cite that anywhere?
Neither can I. And what’s even more telling: the people that I tested claimed that they were acutely sensitive to EMC fields in the milliwatt range at several meters distance (e.g. Wi-Fi), yet in their medical history they also mentioned MRI scans – which typically involve EMC pulses in the kilowatt range at mere centimeters from the body – without any ill effects whatsoever. BTW, one of these persons may have nerve damage in the thoracic region as a result of radiation treatment for cancer – which could explain several of her recurring symptoms. Then again, I am not qualified to make diagnoses such as this, and I advised her to consult a neurologist about this.
Well, yes, there are very few people who even come close to actually understanding it. But the basic principle is that in everyday situations, its specific effects have a range of nanometres. At any larger scale, quantum effects ‘smear out’, resulting in the more familiar, Newtonian-like world that we experience as humans. And I still have to see the first scientific research to establish a direct link between health and quantum physics, without the usual intermediate mechanisms of chemistry. Until such time, I shall be extremely sceptical about any health claims mentioning ‘quantum’.
I know that all too well. But the reverse is even more compelling: there cannot be causation without at least correlation.
Anyway, interesting as this exchange of ideas is, I’ll leave it at this, as this is rather drifting off-topic 🙂
Thank you for the link to the ME stuff, and for your ideas on the matter, and best wishes!
I did not say you had cited the flight-fight response – that is merely the most common and first one to be used. 🙂
But yes, we are absolutely off track. Thank-you for your interest and the time you have taken.
I’m sorry and I apologise to everybody for this. Good luck with your research.