In the previous post about the NICE Guidelines revision, it was reported that Prof Mark Baker of NICE had raised the issue of the right of patients to refuse treatment, in this case with CBT and GET in mind. Steve, who frequently contributes to this blog, left the following response in the comments, pointing out that our system does not in reality allow patients this choice. I think it is – unfortunately – spot on, so I’m giving it a post of its own by airing it again here.
Over to Steve:
It is being rather naïve or even ‘economical with the truth’ to say that patients are at liberty to decline offers of CBT/GET (or any other treatment). In reality, you are being made an offer you *can’t* refuse, whether this is theoretically allowed or not.
The least that will happen is that your notes will be marked that you are uncooperative and ‘refused’ treatment. By this simple method, every NHS person you meet thereafter is likely to be wary of you, or even downright prejudiced against you, and you will go to the back of the queue for everything you ask for, and any time you turn up at A&E.
Furthermore, even if you say you will go along with the treatment even though you do not hold out much hope that it is of any use, you can then be listed as ‘treatment resistant’, by which ploy the ‘therapists’ and their ‘treatment’ are absolved of responsibility when you fail to improve.
Another favourite patient dissing habit is to say that you ‘deny’ having such and such a symptom, rather than that you don’t have it: anything to make the patient look bad.
The patient really cannot win, any more than they could going up against the Mafia: You cannot refuse.
(Recently, I tried to endure yet another gastroscopy without anaesthetic. I’ve managed this several times before, but this time I could not stop my stomach flinching against the scope in a way that was likely to be doing damage, so I had to signal them to stop. This was logged as a refusal, despite me having been told to do this if there was a problem, at the start of the procedure.)
In the worst case scenario – if your reputation is particularly bad, from trying too hard to get help to get better – any hint of a ‘refusal’ can be used as a pretext for having you sectioned in order to make you take the ‘treatment’. This actually happened to me even though I had previously organised, on my own instigation, CBT with a Kings’ therapist, but my local PCT had refused to fund it! I had also organised a bed at the then Queens, Romford, inpatient unit, but the PCT had refused to fund that either. After over three years wasted in the local psychiatric services, I was thrown out (though I knew I was too ill), with the advice that I should try the unit at Romford – which had closed down two years before, for lack of patients, due to PCTs not referring out of area! You could not make this stuff up. 
So: while, in the ideal world, patients may, without prejudice, exercise a right to refuse, in *this* world. they will be scapegoated for life, and, quite possibly, even worse.
Steve has subsequently shared a bit more with me about his experience as a (wrongly diagnosed) patient in the mental health system:
spoonseekerdotcom 
This is shocking, but it is the reason I take them up on anything they offer me, fortunately for me, waiting lists are long and I haven’t had to do anything i can’t physically manage yet.
It’s shocking and just so wrong that we have to even concern ourselves with such things considering what we are already dealing with.
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Of course the same applies with knobs on in the case of young people with ME. The parents naturally move heaven and earth trying to get a diagnosis and then “treatment”, often needing several “second opinions”.
When the “treatment” doesn’t work or makes the young person worse the parents are blamed for withdrawing from treatment, which of course is “not acting in their child’s best interests”
I have accumulated c 20 families in the last 5 years who have been taken to Case Conferences for alleged FII (Factitious and Induced Illness, previously Munchausen Syndrome by Proxy)
Of course once social services have arranged a case conference they have to justify their actions so they have to put the child on the Child Protection register, and then of course you have to have a “protection plan” which the parents have to sign up to – it seems as if there is a kind of madness on the part of professionals, rather akin to the Spanish Inquisition (and with similar thin-lipped self-righteousness)
Fortunately none of the above cases have succeeded, apart from a case that I lost in Norway, where a brother and sister were removed from their mother and placed in foster care, with mother only allowed to see them 3 times a year
One message to the ME community – stop looking for “treatment”. If there was a cure we would have all have heard of it. Just ask for diagnosis, sympathy and support!
And don’t complain about doctors or social workers unless you are in a very strong position – I have seen several cases of proceedings driven almost certainly by a desire for revenge on the part of professionals.
I have written an abstract on these problems for our Paediatric College meeting in March but unfortunately it was rejected
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I’d modify Dr Speight’s advice on not looking for ‘treatment’, as I would advise that any diagnosis is only provisional until the discrete cause and mechanism of each person’s ill health is known. Thus I would encourage not being too dogmatic about having M.E, FM, or whatever, but to keep on trying to understand how your symptoms might be caused. It doesn’t have to be a soul destroying search for ‘treatment’, but it certainly can be a stimulating and rewarding educational opportunity. Before I got ill, I knew next to nothing about human biology and medicine–mostly because, before the WWW, there was little public access to the literature. Now that nearly all knowledge is only a mouse click away, we can become educated patients, and, quite conceivably, one of us could chance upon an idea that turns into a ‘treatment’ for us all. After all, we have a much greater incentive than anybody else.
On the Munchausen’s situation: I think this is a classic example of projection, when purveyors of unproven cure-alls, accuse their victims of ‘false sickness beliefs’, when it is they, themselves, that have the false beliefs, will not yield to reasoned argument, and obtain personal reward and heightened esteem through their projection, and their attempts to cure it with their own patent nostrum or mantra.
There are indeed diagnoses of MBP to be awarded, but I believe that an impartial and well informed observer would be conveying them upon the CBT cultists: not their victims.
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With respect to spamletblog, he is talking about DIAGNOSIS not TREATMENT
Of course accurate initial diagnosis is essential and often difficult to obtain.
I still hold by my advice to stop seeking for “treatment” – it nearly always leads to disappointment, and often leads to problems due to getting into the hands of the wrong professionals.
I agree about the phenomenon of projection to which he refers; its a bit like Trump accusing others of spreading falsehoods!
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Yes: I had thought of the way Trump and his ‘alt right’ specialise in projection too. I believe it is a standard propaganda trick.
I am not really especially talking about searching for diagnosis: I am talking about searching for facts and seeking to understand them. Pure scientific research, in fact. There is no point in searching for treatment, if you don’t understand what you are trying to fix, but, often, once you understand the problem, an answer is closer to hand than you thought: quite likely created by someone working in an entirely different field, out of pure curiosity and the thirst for knowledge. A real scientist.
I made my point because I don’t want people to give up, and be content to lie in bed twiddling their thumbs for the rest of their lives: which is what the NHS would probably be very happy for them to do.
Through my own reading, and chance prescribing of medicines for other symptoms, I have found a treatment that keeps one of my most constant and sleep depriving symptoms under control, such that I often sleep better than before I even knew I was ill. What works for me, may only work for a handful of other people, so it is not a ‘treatment for M.E’, but it *is* a treatment–not a cure–for me. Others may find their own treatments. They must be alert to the possibilities, read widely, and never give up.
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Lots of people on FB are wondering what you take to help with sleep, Steve. Would you mind sharing it here and I’ll pass it on to them?
I guess this makes the point that diagnosis doesn’t give you better quality of life; treatment of symptoms does!
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I’m a bit reluctant to trespass into the GPs’ world of prescription medicines, but, I have discussed this before in several ME group threads, so to some extent, I’m already committed…
Many years ago I was given an ME diagnosis by a consultant with an interest in ME, found for me by a rare, conscientious, and proactive GP.
Before I could get very far with him, he moved on, and things were mostly downhill for three decades. I’ve had several additional/alternative diagnoses–IBS, ‘CFS’, hypochondria, hiatus hernia–in this time, without there really being any change in my condition other than it getting gradually more disabling, and me continuously adjusting lifestyle, until I ended up housebound and then bedbound.
I have been, for the last two years, lucky to get a new GP with an interest again, and he thinks I may be nearer to FM. My own view is that I don’t have the trigger spots required for FM, but I do tick most of the boxes for ME, though it is by no means typical–so what helps me might not help ‘you’–and I am anticipating that it may be something more unusual, or idiosyncratic, and am keeping an open mind.
Anyhow: mostly for severe apparent gut pain, I had been given Tramadol…
[I am not medically trained, so what follows is just from my own reading and understanding, and personal experience, and will also be highly simplistic.]
Tramadol is an unusual opioid, in that it is rather weak in its action on opiate receptors, but it also has action on serotonin, and noradrenaline receptors. The gut is often referred to as being a ‘second brain’ in that it has its own complex system of receptor controls, and serotonin receptors are particularly abundant. This may explain why Tramadol was more effective with the gut pain than other medicines.
Recently, I have read that current thought is that the action on the noradrenaline receptor is supposed to be Tramadol’s main route to painkilling, but I’ve not tracked down the original source yet.
I was, at first, a bit puzzled on reading about these properties of Tramadol, because, whenever I have been given SSRIs or SNRIs, after a few days, I found myself getting very wired and nervous as I got hungry, and, when one hospital visit doubled the dose, I actually started getting psychedelic side effects at mealtimes. After similar experiences with several different types, I gave up on them, and thought, perhaps I already had sufficient serotonin! Yet, with the Tramadol, I got much reduced gut pain and greatly reduced peripheral nerve burning, but none of the frightening side effects I’d got with SSRIs or SNRIs proper.
There are many different types of each of these receptors, and I would never be able to remember which is where, and what affects what, but, it seems reasonable that Tramadol’s action may be through a different route than the antidepressants proper. Possibly it’s its ‘weak’ opioid action that tips the balance.
Anyhow, the only ‘brain’ effect I noticed with Tramadol was that it seemed to sharpen my mind a bit to help me concentrate. It never made me feel sleepy in the way the product sheet warned.
These are good properties to have, but it wasn’t the big breakthrough I mentioned above. That came later, when I started to get headaches as well, and I was given CoDydramol, which is a combination of a more traditional opioid, with paracetamol, which enhances its action and enables using less of the opioid.
The CoDydramol wasn’t spectacularly effective on my headaches (which turned out to be sinus infection and blood clots…), but I suddenly found that the soles of my feet almost stopped burning altogether, and my legs felt wonderfully ‘calm’, and my bed was suddenly amazingly comfortable. Previously, I had often had to sleep on the floor with my legs up, because I just could not lie still for more than a few seconds in a bed. At times the burning was all the way up my spine and I had to lie on something cool, like lino tiles.
When the Tramadol and CoDydramol were working together, I could keep still and go to sleep within a few minutes (which I’ve never been able to do) OR I could use the cleared brain fog to concentrate on doing things like writing this in the middle of the night–but still go to sleep whenever I want.
A real miracle–*for me*: It may do nothing for you: I may just have odd nerves.
I keep fairly good notes of the meds and meals I take, and any effects I notice; and I found that, when there were hold-ups on prescriptions, and I ran out of one or another, I would sometimes have to try to use ordinary paracetamol with the Tramadol [which is the way it is suggested to use in FM–though not hugely effective according to one big metastudy (though that might be through ‘FM’ being another group of different illnesses lumped together, like ‘ME’)].
This never worked: I’d always end up rolling about from side to side, with my lower legs and feet burning, and my feet ‘pumping’–like with a car foot-pump–so that my shin muscles were really aching as well as the skin burning, and it was, thus, impossible to keep still long enough to fall asleep.
Recently, my GP suggested that the opioid in the CoDydramol would be interfering with the Tramadol and stopping it from working as well as it should do. He wanted me to take just paracetamol with the Tramadol, but four times a day instead of, my current, two–as part of the CoDydramol.
This seemed odd to me, as I had only heard of paracetamol working synergistically with Tramadol, and not that opioids/ates interfered with it. I was wary of taking twice as much paracetamol as I needed, but I did try the experiment, even though it had not worked before. Unfortunately, I spent three days thrashing about with burning legs and feet, and was very grateful I still had some CoDydramol left, when I had to give up.
It might be thought, that these could be construed as opioid withdrawal effects, but the burning and restless legs was a problem long before taking any painkilling meds. I used to just think that beds were all uncomfortable, and thought my feet burned because I might be allergic to carpets or something in socks and shoes. It was the gut pains and distension that took my breath away, and stopped me getting out and about, that were my main problem, so I wasn’t really looking for a medicine for the burn. I was just lucky I happened to be given the right combination of meds for two different symptoms, and it, unexpectedly, happened to control a third.
To my mind, it seems logical that what is happening, is that the paracetamol part of the CoDydramol does, indeed, enhance the painkilling action of the Tramadol, but that the opioid part actually makes up for the weakness of the Tramadol action on opioid receptors, with the result that both the burning pains and the aching pains are much better controlled than with either medicine acting alone.
As I said at the top: I’m not a doctor, pharmacist, or medical researcher. I’ve just always had an interest in the way things work, and, the internet makes it possible for me to study things I never imagined I would ever be able to study. As I read and hear more medical science, I may change my view of what controls my restless, burning, legs and feet. But, for now, the exact mechanism is less important that the lived experience. I must stress that this *does not* stop the burning completely: it just does it enough to let me lie still. My skin still feels like mild nettles have been brushed all over it, but, so long as I can keep still, and sleep, I can ignore that for most of the time.
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Thanks for your substantial response, Steve. I shall pass it on. A few replies come to mind. Firstly, it illustrates that a good GP can bring relief to some of the strange – and in many cases utterly horrible – symptoms we get if they’re willing to try. Secondly, it is sad that the NICE Guidelines effectively discourage doctors from doing so. And finally, the kind of detailed symptoms you describe which do not appear in the medical textbooks are all too often treated not as clues to what might be done but as evidence of hypochondria.
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Thanks MrSpoonseeker.
Recently, following a quote on VirologyBlog to its source, I came upon a 1983 BMJ paper by McIntyre and Popper. It is beautifully argued, and explains why progress in research is held up by entrenched attitudes in the professions, and the medical professional in particular, being expected to be infallible.
A doctor who is wrong, has ‘made a punishable mistake’: a scientist who is wrong, has just learned something new. McIntyre and Popper didn’t go so far as to state it, but, this fundamental difference between medical professionals and pure scientific researchers, makes medical professionals intrinsically unsuitable for medical research involving patients, where they might be sued, or even struck off, for being ‘wrong’.
I think this goes some way to explaining why certain ‘researchers’ we know will continue flogging their dead horses long after the stable has burnt down! It also shows why, when faced with a patient they cannot understand and easily medically pigeonhole, they are much more likely to suspect the patient than accept their own fallibility. I expect that many don’t even know they are reasoning this way: it goes with the job. They cannot ‘diagnose beyond the buffers of the known’, as I made out in my post on a ‘tree of diseases’ below, because this strays into the area of science, where trial and *error* is, not only acceptable, but *necessary*.
I tried to post McIntyre and Popper’s words on the VirologyBlog comment stream, but it’s got flagged as spam, and I think that only myself and the original quote poster have seen it. I hope it works if I post it here, because I think it is one of the most important papers I’ve read:
“The old view of the growth of knowledge, especially of scientific knowledge, is still widely held. According to this view,knowledge grows by accumulation: we discover and collect more and more facts. This view is not,of course, totally mistaken. Knowledge does grow, here and there, by accumulation. Yet far more often knowledge grows by the recognition of error by the overthrow of old knowledge and mistaken theories. Even the discovery of a new species can be the correction of a previous hypothesis. What was regarded as one virus may prove to be several different viruses (or vice versa).
The erroneous hypothesis may have stated a non-existent causal relationship: catarrhal obstruction of the bile ducts was thought to cause epidemic jaundice (now thought to be due to viral hepatitis ); a mistaken observation may lead to an anatomical myth such as that of a direct connection between the right and left ventricles of the heart. Or a fundamental but mistaken theory may be proposed, such as Darwin’s theory of pangenesis. We think that revisions of such hypotheses, which may have the character of major or minor revolutions, are more important and more characteristic than the finding of new facts. …
..There is no absolute certainty in science. Scientific knowledge is conjectural, hypothetical. As a consequence there can be no authorities. …
… the old ethics are built on the view that scientific knowledge can be certain knowledge, that knowledge grows normally by accumulation, and that it can be acquired and stored in a person’s mind. These ideas create an environment favourable to the emergence of authorities. To be an authority became an ideal of the old professionalism. These ideas have terrible consequences. Authority tends to become important in its own right. An authority is not expected to err; if he does, his errors tend to be covered up to uphold the idea of authority. Thus the old ethics lead to intellectual dishonesty. They lead us to hide our mistakes, and the consequences of this tendency may be worse even than those of the mistake that is being hidden. …
… 4) Errors may lurk even in our best tested theories. It is the responsibility of the professional to search for these errors. In this he can be helped greatly by the proposal of new alternative theories. Thus we should be tolerant of ideas that differ from the dominant theories of the day and not wait until those theories are in trouble. The discovery that a well tested and corroborated theory, or a commonly used procedure, is erroneous may be a most important discovery.
5) For all these reasons our attitude towards mistakes must change. It is here that ethical reform must begin. For the old attitude leads to the hiding of our mistakes and to forgetting them as fast as we can. …
… 6) Our new principle must be to learn from our mistakes so that we avoid them in future; this should take precedence even over the acquisition of new information. Hiding mistakes must be regarded as a deadly sin. …
… Attitudes to audit and peer review
Unfortunately, but understandably, many doctors are antagonistic to audit. They resent the idea that their work should be reviewed. As Sir Douglas Black stated: “There are strong public and parliamentary pressures to bring medical practice under closer scrutiny, whether by the Ombudsman, or in some other way. Some members of the profession maintain that such pressures are to be resisted, without argument and without compromise, and that we should have nothing to do with medical audit, quality control, or whatever.””4 …”
… Even when error is conceded it tends to be excused in some way. “It is often verbalised in order to get reassurance from friendly colleagues. By conceding error to friends who will not themselves criticise, one gains the cathartic benefits of confession while avoiding the price of penance. “Self criticism is thus acceptable; criticism by others is not and those who offer it may be viewed as troublesome meddlers. …
… Authority does resist challenge,and, clearly, if the performance of individual doctors was found not to live up to expectation then they would suffer a sense of shame and a loss of self esteem. This is an important reason why mistakes are covered up and why only a few doctors seem to welcome the possibility that they might be uncovered.”
This brilliant paper explains everything about the whole Crawley/PACE etc. fiasco. They *can’t* accept mistakes *because they are MEDICAL doctors*.
https://scholar.google.co.uk/scholar?hl=en&as_sdt=0%2C5&q=“The+critical+attitude+in+medicine%3A+the+need+for+a+new+ethics”+author%3APopper&btnG=
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I agree very much with Nigel Speight re: stop looking for treatment. At least for the entity we call ME or its variants. Yes, for the reasons he cites, as well as for the damage, both obvious and indirect, that even the most well-intentioned therapies currently offer. As I scan the message boards and read articles by ME patients, I see people going to the very best clinics in the US that specialize in the disorder going broke and being worn out by the drugs, tests, travel, long waits in the offices, and so forth. My own experiences with a dedicated CFS physician are the same. Until we have a verified treatment program, I think we often do more damage than cure to our messed up, fragile bodies. I have begun to focus only on very focused symptom relief: what can you do for me for migraines or sleep problems or vision problems, etc.? I end up feeling less like my body is being treated as a war zone.
My reply so far, I realize, is a bit off-topic and doesn’t even begin to address the bogus, mean-spirited “cures,” such as CBT. I am struck by how true the lack-of-consent argument rings – and how most patients are women and the history of this illness is absolutely brimming with medical sexism in its worst forms. This feels analogous to sexual assault, frankly – the idea that women can be treated with no informed consent or no true consent at all, much like women are so often subject to sexual harassment and assault. I don’t think it is a coincidence that the medical profession’s approach to ME exemplifies medical sexism AND it denies true consent to its patients.
You cannot explain anything, anything at all, about this illness and how it is handled medically without referencing sexism. It permeates every single aspect of how doctors and researchers see the disease and its sufferers.
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Belated thanks for your comment. Your remarks re treatment are very sensible, I think, though most of us do not have the patience to wait for accredited treatments which may never come. To be honest, if I’d never tried anything, then the last few decades would have been even worse than they have been. Most things didn’t work but some of them did. The threat of bankruptcy and the danger of making things worse must always be borne in mind however.
Thanks too for your very powerful words on the role of sexism in attitudes to ME. I found them very persuasive…
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I’m a UK citizen living in Spain. I was denied disability benefits by the judge so I appealed to the high court. They refused any payments citing that I hadn’t undergone CBT or GET. So I have now had to do both (made my ME worse) despite being in a wheelchair and I’m currently waiting the result from my second court case now. So no, we don’t really get a choice on whether to accept the so-called treatment. It needs to be dropped from the NICE guidelines immediately as the UKs influence on other European countries is causing damage to patients physical and financial health.
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Teresa, would you have gone before a UK judge or a Spanish one? I’m not sure how these things work for an EU citizen of one country who lives in the other.
I find it horrifying that any judge would interpret NICE guidelines as equal to law when they have not been passed by the parliament and they have been proven destructive of patients’ health and lives.
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There seems to be some crossed-purposes here on what is meant by ‘treatment’.
It appears that what is being referred to as ‘looking for treatments’ (as ill advised), is really about the problem of looking for *purveyors* of ‘treatments’ that *they* claim can lead to successful cure. At the moment, none of these purveyors actually has such a product, so: No: this is not what one should be looking for.
On the other hand, LS says she is looking at ‘focused symptom relief’. That is an example of what I refer to as a treatment–or treatments, if taken symptom by symptom.
As for diagnosis: I find it helpful to think of an artificial taxonomy of diseases. I say artificial, because we are in a similar position with some diseases, as natural history’s taxonomists were in before the advent of comparative DNA sequencing: taxonomists set up families and genuses of species (taxonomic units), based on their physical large scale similarities. Once taxonomy had evolved to the stage of comparing the very stuff of life–DNA–some of the headings had to be changed, and some of the species had to be renamed and moved to a different place on ‘the tree of life’, when their genotype showed that, despite outward appearances, they had been misfiled.
I would put ‘ME’, ‘FM’ and similar outwardly appearing diseases, in a ‘family’ one might call ‘MEaceae’, which would have putative ‘genuses’ of ‘ME’, and ‘FM’. The actual ‘species’ level, remains to be determined.
In the case of natural history taxonomy, most of the work of describing and sorting was done over hundreds of years, by gentleman science hobbyists, with time on their hands, and room to keep and spread out collections of specimens, to be compared with one another. It is only comparatively recently that advanced technology and the advent of bio-prospecting for useful genes has taken progress in taxonomy out of the hands of amateurs, and started a literal root and branch editing and redrafting of the tree of life. In microbiology, even the number of phyla has increased dramatically: we are seeing whole dimensions of the tree that were hidden before.
The problem with our tree of disease relationships, is that the medical profession has been content for the exploration of taxa to stop at the level of the ‘family’, but this is a level where it is unlikely that any treatment can be found that would cure, or even benefit, every unknown and so far unnamed, ‘genus’ and ‘species’ that the ‘family’ may prove to contain.
As with the bio-prospectors in the natural history world, so with the cutting edge biochemists of the bioinformatics generation: the thirst for knowledge and profit, will gradually resolve the next level of the disease family tree; and then the next. Eventually, the whole structure, like the ‘tree of life’, will be edited, pruned, and a few stages closer to perfection. Then each ‘species’ and ‘variety’, of disease, will be matched with its own treatment and, hopefully, cure.
Some disease entities may be moved to other parts of the tree entirely (We already see a battle between neurologists and cardiovascular specialists over where to file what we call ‘stroke’: maybe it is the ‘tree of specialities’ that needs pruning…).
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