I'm concerned about the false dichotomy according to which there is true ME and misdiagnosed depressed patients because it does in part agree with the psychosocial narrative.
I doubt that these psychosocial treatments are actually helping anyone except perhaps in a few cases. One need only look at the PACE trial to see a lack of results even in a "chronic fatigue" cohort. Whatever problems these patients ultimately had, the psychosocial approach was a failure.
Hello, I'm confused as to what you mean (I've having big problems understand cognitively so please excuse me if I have missed your message or am getting my wires crossed, which is most probable! I think I know what you mean and I'd agree.
The OP was asking about should they go see a 'shrink' and I was saying if that's OK and you need one, but otherwise be very wary. I don't see how there' a false dichotomy re: ME vs misdiagnosed? I mean I can see if you haven't had my life, so I guess that's where we agree to disagree. I can still respect your opinion though and out of (my experience) I can see, structurally, what you mean.
Here's why I know I'm not biased, as many times I have 'road tested' and 'viewed' the products of CFS/ME - various human beings in various states of health, in hospital in patient admissions. (I've been incarcerated in these CFS 'rehabilitation' units as a youth and as an adult. Some patients as severely affected as me who are as old are now deceased). So on this basis, I have an most unusual 'life time experience' engaging with UK NHS psychiatry over decades and just wanted to let you know this, that I don't have an axe to grind, my bias (we're all biased) is based on experience of in-patient admissions that I think if you're outside the UK, is hard to find because the cost if funded by the UK tax payer. In America, for example, my bill may have been $500,000 or more each time, because bed's cost a lot of money over months. Ironically, as cost is not an option in a 'specialist' state funded neuro psych ward, you can piratically live there. That is not fun, if you need to leave!
I've been inside for months at a time, months, not days or weeks. I therefore know precisely what goes on be it ER, Respiratory wards, Psych wards, Neuro wards, because the hospitals became my home and I learnt all the staff's names and befriended them even. I saw 'CFS' patients (walking around into my room who said they drank alcohol, smoked, traveled independently), I saw a few 'ME' patients (some with eye masks, can't speak or move). This is all inevitable with a heterogeneous group of people all labelled with the same 'thing', who never had any tests!
I experienced lots and lots of mistakes. and of course, mistakes lead to neglect. Neglect is form of abuse. It wasn't just psychiatry that did this to me, they all did it. (Psychiatry was just the worst).
When I told the staff what they did to me and other patients was wrong, they ignored me, and sang from the hymn sheet that i was being 'resistant' and should 'comply' with what the others did. To me, this demonstrated the attitude of these 'experts' to not be able to differentiate form people moderate or mild affected and someone bedridden. They would not accept that 'severe' forms exist, and people are only severe because of their attitudes and beliefs making them 'deconditioned'. I was chastised for failure and others, they were praised for recovering. ('They', being the visiting patients they told me about, or the odd one that would pop in to say hello). All nice people, I got on with, but didn't recall any of the classic ME symptoms at all. As I was mild, then moderate, then severe I can remember what ME feels like, when not housebound and actually able to participate, initially, in some form of life although restricted in nature.
The recovered people told me they were not on any medical treatments. They were on behavioral modification programs. (Diary, writing down how far they walk, going to bed at exactly the same time, almost obsessively).
Not once did they report the barriers to this I had when even moderately affected at first: Pain, Low blood sugar, Vertigo, Shortness of Breath, Orthostatic Intolerance, Chest Pain, Insomnia, Infection, Severe headaches, Tinnitus, Seizures. Thus they 'complied' very well with increased activity and were back home. Good for them, but they didn't have ME obviously, because ME does everything I just listed.
Thus the 'cured' ME patients in Hospital I met (or told about also) are living, walking proof that people diagnosed (I call misdiagnosed) with CFS (who have no symptoms of signs of ME) are indeed, mentally ill, because the cure, was
their mind, via alteration in beliefs. These are the clients psychiatrists see, but they give an unfair bias, because psychiatrists believe that if
some patients can be helped with psychological therapy, then
all patients can. And there is your danger in terms of hospital based therapies and neuropsychiatry in the NHS in the UK. Psychiatrists know very well that you need an inpatient admission for someone housebound, they can get you in, they will offer you 'treatment'. The naive patient, walks in not knowing failure is not accepted. When you fail, they will deface your medical history, by making wild assumptions as to why you fail with CBT and GE. Future doctors read this garbage. You thus will find it harder to be believed in the future.
What I did see, is that there are 'cured' patients, because I met them. Literally. These people, told me they were depressed but took various pills and potions and chose a different way of life to help them cope. For me, that is relevant, and not a false dichotomy because their treatment was that of CBT and they did not report the symptoms of ME when I asked them (autonomic dysfunction, infection feeling,muscle weakness pain, cardiac dysfunction etc). They said they just felt 'tired all the time', or as the English say, ''knackered'.
They told me the way to health was through pacing and antidepressants elevating their mood. This is the converse as to what PWME find, as they can't tolerate antidepressants (many other meds and chemicals) and pacing never cures them as the disease is totally unpredictable and no matter how much you pace, you crash from minimal tasks, or indeed with no tasks at all - it just happens as part of the disease process.
1) I was told this also in person, by the psychiatrists that they get people back to school and in employment.
2) I have met them, they are real people and actually I kept in contact with some of them because I liked them and they came to the same conclusion as me, that they never had ME. That's important, the patient themselves (not my belief) telling me this!
Both misdiagnosed ME (via Fukuda CFS) and ME are victims. Psychiatry can exploit this, because they are partly telling the truth by denying organic CFS and ME. For example:
If you read that bizarre (Post IOM release of SEID) rant by Edward Shorter (not a doctor) and other doctors (who deny ME or CFS exists), they like to point out that its' wrong to tell people without disease, they have a disease. I would agree. The people I met, had joined a CFS charity (pointless as they didn't have it), did socialize with people like me virtually (pointless again), and then later once either instructed how to get out of their 'fatigue syndrome' or indeed personal mental health battles, they had their lives back after years wasted. For these people, they can spend a long time 'stuck' with a belief they have ME CFS when they clearly don't have an organic disease (no symptoms, no signs, no treatment but are 'cured'). This is the fault of health agencies creating a ME (CFS/ME) that requires no tests or signs of neurological dysfunction!
People will always be misdiagnosed, indeed, routinely with Fukuda CFS and now SEID to a lesser degree.
From my own eyes, I saw that UK NHS psychiatry 'invite in' two subsets of patients.
1)They like to snatch bedridden people off wards or their homes for not recovering as they are very severely ill.
2) They like to invite in people who are misdiagnosed with a chronic neurological disease (ME), in which they then promote to other patents as 'recovery stories'. If you talk to these people, as I've said before they don't have any of the core symptoms of ME, even at their worst, but they still were diagnosed, ergo they were misdiagnosed. Without question.
I think as long as patients (with any form of ME CFS) know what they're letting themselves in for with CFS psychiatry contact in the UK's NHS, then there is no harm in psychiatry as long as the patient is needing to see a psychiatrist and isn't misdiagnosed. Conversely, if you are 'accused' of having ME because you believe in ME, then seeing a psychiatrist can be incredibly dangerous if you physically cannot leave the premises once your paths cross and their 'theories' of child abuse, overbearing mother, absent father, having no friends anymore, being unemployed runs riot.
There is a deep irony, that as ME is a neurological disease (like any other), the inflammation in the brain cells and CNS will cause neuro psychiatric symptoms in many patients, such as anxiety, but the patient is too worried to tell anyone, because of keeping within genuine neuropsychiatry (such as when someone with Parkinson's may see a psychiatrist) one tends to get shoved into the behavioral modification psychiatry, and that is where a torrent of medical mistake can begin.
Regarding the start of the thread with the OP asking what to do?
On balance, speaking from direct experience if you have organic disease of unexplained cause, and you aren't overtly troubled mentally, then don't engage with ME CFS psychiatry.
The exception being....
If you can walk, if you can get a bus/car/train and physically be independent then there's no harm in seeing what these people have to offer.
I never was severely affected. I've met psychiatrists walking and 'free' and also not so free! So I know, and I can see the great benefit in engaging with people who can drug you to forget your pains (I'd prefer counseling and psychology personally) when times are awful. For suicidal people that can be live saving. I'd never be blinded enough that because doctors and other staff abused me, to believe all people will do this to others, of course not. (The likelihood just increases when the words ME or CFS appear in conjunction with severe disability).
I hope that makes sense, some sense anyway and that I think all adults should chose their own destiny, but when engaging with health services, just be a bit aware that what can be advertised or what appears to be 'useful' for some, may be detrimental for others!
In ME CFS in-patient admissions in the UK, the general rule of thumb is, if you are bedridden you are a somatizer and need rehabilitating mentally. If you are recovered, you are to be praised and respected. Where are the videos from the psych lobby showing bed ridden ME patients unable to be treated? Not one has ever been produced! What we see is people smiling and happy, and standing upright. This is the message, the message is you don't have to be severely affected (which is a medical lie).
This needs to change, and will do once patients can know what illness they have, using tests to actually decipher the riddle for their self report symptoms. We need to have tests, such as a TILT test and cognitive testing and move away from labels based on 'fatigue' for this to happen.
All the best to everyone.