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Professor Simon Wessely says he is misunderstood

ukxmrv

Senior Member
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London
I'm a bit confused with what we would gain from working with the people who run the Psych services side of thing.

As I don't need the Psych services then there is little that they can do to help me.

It's like trying to spend energy on changing a service that does nothing useful for us .... into one that still does nothing for us.

They are not going to change their opinions anyway if getting the financial advantages of doing the CBT and the GET. Like arguing with a religious type or a salesman.

I've been seen in this setting and it can go 2 ways. If the CBT therapist is ethical, genuine and has bothered to learn about ME and read the research then one is discharged with a "nothing we can do for you", if the CBT therapist is ignorant, genuinely believes that they can make us better, then it leads to a waste of time.

Neither of these help us. The Psych services are not going to be doing anything useful for us.

The therapists who do the CBT and GET in the actual Fatigue clinics are not going to risk their jobs and stand up against the clinic bosses. We know because we have already been told by the ones who will speak to patients. It's the clinic leads who have hired them and made it clear what services they will provide.

I also disagree that other groups with long term physical conditons are being treated with Psych services in the same way. In the UK I've met with people with a range of medical conditons yet none of them are being offered CBT and GET or activity management as their SOLE or PRIMARY or MAIN treatment. In the vast majority of cases it's not even being mentioned to them.
 

ukxmrv

Senior Member
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4,413
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London
Hi Barb, In my area it is a "fatigue" clinic or nothing. No helpful GP to provide care for ME symtoms either.

That means that the people with ME in my area who have attended to see if they will do anything at the clinic and been discharged are left with no medical care. Those who do attend are told that it is CBT, GET or be discharged. Those who do not attend are left in the limbo of nothing.

It's even worse for those who are trying to get help from an insurance company.They are often forced to undergo treatment that they don't want to do or else the insurance company blame them to try and avoid paying out.

I think that bringing "choice" into it is a mistake as it's a choice between nothing and nothing - so not really a choice.

Not sure if you really understand the impact of these clinics in the UK. They were announced with a huge fan-fare from the UK goverment as being set up to treat people with CFS and ME. In reality they don't in most cases. The odd gem aside.
 

barbc56

Senior Member
Messages
3,657
Then wouldn't it be like it is in the states where your regular doctor prescribes meds. to help your symptoms? Surely, a doctor would prescribe things like pain medication, etc. for anyone with or without ME who has pain issues. I am genuinely asking as I'm still learning about health care in the UK.

It's even worse for those who are trying to get help from an insurance company.They are often forced to undergo treatment that they don't want to do or else the insurance company blame them to try and avoid paying out.

Okay, now I'm really confused. I thought you had universal health care.
 
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10,157
I am sure this has been posted here before. These are apparently Wessely's own words.

Can people think themselves sick? This is what psychiatrist Simon Wessely explores. His research into the causes of conditions like chronic fatigue syndrome and Gulf war syndrome has led to hate mail, yet far from dismissing these illnesses as imaginary, Wessely has spent his career developing treatments for them. Clare Wilson asks what it's like to be disliked by people you're trying to help

How might most of us experience the effects of the mind on the body?

In an average week you probably experience numerous examples of how what's going on around you affects your subjective health. Most people instinctively know that when bad things happen, they affect your body. You can't sleep, you feel anxious, you've got butterflies in your stomach... you feel awful.

When does that turn into an illness?

Such symptoms only become a problem when people get trapped in excessively narrow explanations for illness - when they exclude any broader consideration of the many reasons why we feel the way we do. This is where the internet can do real harm. And sometimes people fall into the hands of charlatans who give them bogus explanations.

Is that how chronic fatigue syndrome can start?

Often there is an organic trigger like glandular fever. That's the start, and usually most people get over it, albeit after some weeks or months. But others can get trapped in vicious circles of monitoring their symptoms, restricting their activities beyond what is necessary and getting frustrated or demoralised. This causes more symptoms, more concerns and more physical changes, so much so that what started it all off is no longer what is keeping it going.

One of the enigmas is why certain infections, like glandular fever, have an increased likelihood of triggering chronic fatigue syndrome (CFS), while others, such as influenza, do not. We also don't know why people who have had depression are twice as likely to develop CFS. I get cross with people who want to explain one and not the other. Some people take too psychiatric a view of CFS and ignore the infective trigger, whereas others want to think only about the infection.

So how do you treat CFS?

The first thing you have to do is engage people. I see them for 2 hours, which enables me to take a proper history to ensure I understand their symptoms and how the illness is affecting them. This helps people to open up, as they can see I am interested in their problems and taking them seriously.

With many people I genuinely do not know why they are ill. Or if I do, if they had glandular fever five years ago, say, I tell them there is nothing I can do about the original trigger. What makes a difference is what happens next. Then we get on to the practical stuff, such as finding out how people deal with the condition. Are there things they are doing that may not be the best for recovery? Then I recommend cognitive behavioural therapy and tailored programmes of gradually increasing activity levels.

How successful is your treatment of CFS?

Roughly a third of people completely recover and a third show good improvement. About a third we can't do much for.

What about those people who have such severe CFS they are bedridden?

In that kind of disability, psychological factors are important and I don't care how unpopular that statement makes me. We also have to consider what those years of inactivity have done to their muscles. People know that if you break your leg, when you take the plaster off there's nothing much left. If you've been in a wheelchair for some years, the laws of physiology haven't stopped.

Your most cited paper claims that conditions such as CFS, irritable bowel syndrome and fibromyalgia are all the same illness.

If you ask people with irritable bowel syndrome whether they suffer from fatigue, they all say yes. It's just gastroenterologists don't ask that question. Likewise, if you talk to someone with CFS, you find that nearly all of them have gut problems. If you systematically interview people with these illnesses, you find that a big proportion of these so-called discrete syndromes have a large overlap with the others. You have to think that we have got the classifications wrong.

So do you think these syndrome labels are arbitrary?

Each country has different syndromes. They don't have CFS in France; they have a strange one, spasmophilia, where a person has unexplained convulsions. In Sweden they have dental amalgam syndrome, which hasn't really caught on here. In Germany they believe low blood pressure is bad.

The rest of the article can be found here
 

ukxmrv

Senior Member
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4,413
Location
London
I thought you might be confused Barb as you were talking about "choice" when you asked about the clinics.

There is a difference between universal health care and one that restricts access to doctors through devices like NICE.

Would probably take another thread to introduce you properly to the horrors of the postcode lottery.

Imagine, just for a moment what it would be like if your primary healthcare provider (GP) believed that CFS (is that your main diagnosis?) was a psychological disease and refused to refer you to other doctors.

The only place that they would agree to refer you to was clinic which would only offer CBT and GET. Remember that you just can't turn up to see a doctor in the UK (apart from an Emergency Room where they can just refuse to treat you anyway or send you back to your GP).

Imgaine that your GP didn't want to read any "evidence" about CFS. That s/he wasn't interested in any evidence from other countries, any medical journals, any tests or treatments other then what NICE told them to do.

Then imagine how you would feel if all the GP's in your area refused to let patients swap around and choose between them (so you could find a better doctor).

Also imagine if you were housebound and no doctor would come to see you. If you were "well" enough to go to an emergency department then you faced hours of a wait and even then they may not take you seriously. That if you did manage to get an appointment with a consultant, that thay may believe you are a malingering, attention seeking fraud just because you have CFS or ME on your medical records.

Imagine if you had no money and no one would support you or write medical reports to get a state benefit.

It can vary from city to city, town to town. As I said there is the odd gem in there. Not all patients face the same hostility but that is not due to the patient being different, that is due to there being an unusual doctor, clinic etc.
 

Bob

Senior Member
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16,455
Location
England (south coast)
How successful is your treatment of CFS?

Roughly a third of people completely recover and a third show good improvement. About a third we can't do much for.

That's not based on the best and latest evidence. Even when recruiting chronically fatigued patients (i.e. fatigue without other symptoms), only 11% to 15% of patients responded to treatment with CBT and GET, at best, by a minimal amount or more, when using subjective measures which are vulnerable to bias.
Using the only objective measure (the six minute walking distance test), CBT was utterly useless, GET was not 'clinically useful', and all participants were left severely disabled.
CBT and GET resulted in no improvement in employment hours, or benefits claims, or private financial payment claims.
So much for his theories re fear of activity, and de-conditioning.
 

Holmsey

Senior Member
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286
Location
Scotland, UK
We don't have to demonstrate anything to the psych,s they have their own agenda and nothing, I repeat nothing, is going to get their heads out of that big pot of cream. Its not about angry opposition, its just about the truth coming out and with people like Prof Hooper this just may well happen

Really? Tell me what advances in research Prof Hooper is recently responsible for? Does he really write everything that's posted online in his name, or is his name used as a respectable coat hanger for the angry protest voice?

You may enjoy reading that which is posted in his name, it may give you a warm fuzzy feeling inside because someone seems to be on what is notionally 'our side', but show me the real good, the real benefit.

With regards to nothing changing the psyc's, I've yet to meet anyone in life who denies reality and doesn't get looked at like they have two heads, when the mystery surounding this illness is eventually exposed, and presuming we're all correct then the psyc's will change, they'll have no choice.
 

Firestormm

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Cornwall England
I've copied the following from the thread: ME: Bitterest Row yet in a long saga - as we seem to be now overlapping conversations and the subject matter is the same:

The Countess of Mar has published an Open Letter about Wessely: 4th December 2012:

http://www.investinme.org/Article-395a Letter from Lady Mar to SWessel.htm

Appears to have gone down rather well - unsurprisingly - with those on Facebook. I won't post in full, I happen to think it rather misses the point of the published letter and is perhaps too much a reflection of an assumed personal slight - but I can also appreciate where Lady Mar is coming from and her request for a meeting with Wessely is good (echoing that of Prof. Hooper actually).

There is far too much on the internet about Wessely; but I wouldn't hold my breath in getting any concrete or straight answers. Psychiatrists don't work that way!

Kina, kindly posted this interview with Wessely from the New Scientist. Whilst published in March 2009, it perhaps gives some idea at least as to where he was coming from at the time and I hadn't read it.

We might not agree with what he believes - why would we? but I cannot condone the threats towards him and to others engaged in research and clinical treatment - whatever their medical profession or belief or outcome of their work.
 

Holmsey

Senior Member
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286
Location
Scotland, UK
@ maryb 146 - I'm a twelve yearer with complications now - so no room for laughs here - I do not believe "engagement" with those who caused ME to be seen as something "all in your head" and still try to hold on (in various ways) to the psychology of it. The way forward is biomedical research.

Hi Enid, I'm sorry to hear that but the 'all it our head' theory would never have held any traction if this was a simple illness, for some, whey you look and look and look somemore without finding anything, then you just reach a point where you think there's nothing there. My critisism wouldn't be reaching that conclusion but failiing to change it in light of better systems of testing throwing new light on the subject.
I'm sorry, I find myself unable to subscribe to a notion where 'all' psyc's are deliberately hiding the truth in order to have more important lives and more patients.
 
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Hi Enid, I'm sorry to hear that but the 'all it our head' theory would never have held any traction if this was a simple illness, for some, whey you look and look and look somemore without finding anything, then you just reach a point where you think there's nothing there. My critisism wouldn't be reaching that conclusion but failiing to change it in light of better systems of testing throwing new light on the subject.

Like MS? I don't think anyone is currently proposing that is a disease with psychiatric involvement, but 30 years ago, they were exactly where we are now: no one knew what was causing symptoms, so psychiatric and psychological causes were presumed.

And that's where they'd still be if they had stopped looking because they thought "there's nothing there."
 

maryb

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UK
Holmsey - Of course I realise that Prof Hooper isn't doing any research (well not that I know of), its not about that, its about a well respected eminent physician publicly defending the fact that ME patients have had non existent treatment for a physical illness, and that the psychs should butt out. We don't have the voice that the Prof or the Countess have.
Re your other post - The psychs are 'not deliberately hiding the truth, but its the same situation as MS, for many years it was viewed as a hysterical illness, now I'm sure many of those doctors who did tests which came back normal were happy to go along with that diagnosis, not deliberately hiding the truth.
But with ME now, researchers and ME specialists all over the world are coming up consistent abnormalities which is leading somewhere, even Wessley said his squad had found something, but of course they are not interested in physical abnormlities so he wouldn't follow these up in a million years. Time is running out for them I'm sure of that.
 

Firestormm

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Cornwall England
Firestormm - I'm sorry to hear of your experiences, but I still don't accept that ME cannot be treated as a physical illness, and that we have to conjoin the mind and body treatment, so its - hang on we'll just forget the body treatment and let the psychs do their thing in this country??

What good is that to me and others who don't have any mental health issues?? I say it again, is any other physical illness treated like this? I'll answer for you, NO

Thanks. I dare say people will be gaining some comfort from Lady Mar's words this morning, but I wanted to say something more about the matters being addressed here, and by UKXMRV following your post, if I may.

If this goes a little awry, it's because these same conversations are happening all over, and I am seemingly having several that repeat themselves - so please bear with me if you would.

You know in my 15 years of endurance and survival, I have often pondered if 'modern' medicine ever really moved beyond "an aspirin and sympathetic ear" metaphorically speaking.

It took me a long time, and was only achieved in my 10th year I think, having returned to Cornwall being unable to cope with my ME unsupported and alone and having struggled stubbornly with independence, to gain some greater relief from prescribed medications for my ME symptoms - some of them anyway.

This aspect of clinical care is indeed sadly lacking. I think sometimes that we are led to believe - childhood memories perhaps - that once upon a time our GP would have been more able to get to know us, to understand us, and to be in a better position to diagnosis and prescribe accordingly.

You mentioned 'postcode lotteries' and this is true. It is also true that GPs have between 5-10 minutes allocated to them for each patient. The pressure on patients - like me - to try and keep to the time-frame is not conducive to healthcare in my opinion.

If I want that 'sympathetic ear' I am now referred to a counsellor or psychologist or clinical psychologist - for help with living with my disability. If I have specific problems as a result of mental health I might be referred to the mental health team.

But we are not unique in this treatment, not by a long shot. And we shouldn't associate our own experiences with some generalised statement that services and treatment for ME is in anyway unique - unless we know that it is.

Lady Mar says I understand, that without Wessely and the 'psycho-social' approach people with ME would receive better treatment. My question is 'What treatment?'

There is a distinction that I think needs to be made and always borne in mind but that seldom is: the difference between clinical treatment and care - and scientific research.

You mentioned MS. In my county, when I was better able than I am now, I used to be driven each Friday to the Merlin Centre where I had a small office and helped (well I like to think I did) a small neurological charity. We aimed to bring together all neurological conditions and their respective charities locally, and represent them collectively to raise awareness and improve healthcare provision for all.

Now, I can tell you that no other neurological condition (long term condition as these things are categorised in healthcare), had a specialist service, led medically by a consultant immunologist, and supported by specialist GPs, Consultant Occupational Therapist, Occupational Therapists, Consultant Clinical Psychologist, Physiotherapists, and Dietiticians.

Not a single other condition had that support in one place, that delivered care across the county in local community hospitals and was able to provide home visits. Not one. But 'we' did. ME did. I say 'did' because we don't have that same structure, funding or resourcing any longer - it's a mess - but they are still providing a service that no other condition has.

When the MS Centre (above) opened, it followed years of fundraising and voluntary effort. Years. I have worked with and spoken at length with people who have MS as their primary diagnosis. When this place opened it was to them a 'godsend'. But why? What does the Merlin Centre provide that the NHS doesn't?

Is it better drugs? Is it better diagnoses? No. It is support and care and understanding. This is something that patients themselves wanted to be delivered in one place - and they travel there from MILES away. Believe me. MS is known about, it has a cause, it has treatments that are targeted (unlike our own), with a greater or lesser degree of benefit, and yet patients still need that 'sympathetic ear' and help and suggestions; that they don't feel they get from the NHS provision.

They also come for physiotherapy including Graded Exercise, psychology/counselling including CBT - but in the main it's a place for socialising in-between these treatments. Oh and Oxygen Therapy - sorry forgot.

Oh for sure, they'd like more access and involvement from their Neurologist (some had never seen one!), they'd like more medical involvement period. But - and from what I do know about other conditions - this is the same across the board.

I recall one old gentlemen. Great guy. Wheelchair bound. He told me of how it used to be. He'd been diagnosed 40 years ago or something, and yet had never had the support that this Voluntarily staffed centre has provided. Never. Not from the NHS or elsewhere.

Our options in terms of pharmacological management - which is what I would say this whole thing boils down to - excluding of course 'anti-depressants' [shiver] is limited. Sure we can be prescribed things that might alleviate some of the symptoms that we suffer - as I now have - but nothing has yet been invented to target the condition itself or the constituent parts - even if they were known!

It is essential I would argue that medical specialists are retained in ME Specialist Services - if only for the purposes of diagnosis and prescribing of those medications that might help and that 'sympathetic ear'. We do need to do all we can to ensure better diagnosis but we also need to ensure that we are managing our condition in the best way possible - and if we do fall foul of a co-morbid mental health concern - that we have access to mental health professionals also.

But those psychologists and counsellors should be retained and involved in our primary care needs - expressly for purposes of helping us to learn how to live with our condition at a clinical level. These kind of practices are not unique to ME. What about 'Pain Management Clinics'? Are they 'pants' too? And such interventions are not always delivered by psychologists either - Occupational Health Therapists deliver Activity Management, Pacing, GET whatever you want to call them too - as will medical doctors similarly provide advice.

Anyway, do you know the estimated extent of misdiagnosis in Epilepsy? It is 39%. 39%!! And that's for a condition that should be objectively tested for - (though the test is far from conclusive). That's roughly the same rate as for ME. Makes you think, doesn't it? Are we really unique? Are other conditions jealous? :)

Getting a diagnosis - an accurate diagnosis - is a comfort I agree and having it communicated to you in an educated and helpful way is a must. But such a thing is harder for ME than it even is for Epilepsy it would seem. There are non-mental co-morbidities surrounding ME - POTS might well be one that affects some people, and through better education we might hope to ensure these are recognised and treated accordingly; however calling for psychologists and the like to be removed from the equation is not conducive to the system and it would leave patients who can take advantage and make use of these services - bereft.

What do you do though when you have been treated with drugs as much as you can? There is a brutal saying I sometimes use with myself and indeed has been used with me too:​
"YOU HAVE ME. LIVE WITH IT!"
And, on occasion, I need help to learn to live with it. And that help is not always contained in a medicine bottle. Talking to someone will not cure me, but it is a relief nonetheless.​
There is a whole system at work in healthcare. And you have to fight, it seems for everything. And that is wrong - especially for those who are not able and end up having their voices unheard. We see it all the time - yesterday it was about the lack of compassion in Nursing for example.​
In Science - well - that there has been a preponderance of psychological research is a given. The balance was indeed out of whack for a long long time. I have been more than open about my feelings for the PACE TRIAL. But I still want as many people from as many different backgrounds searching for clues that might lead to answers.​
 

Jenny

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Dorset
Like MS? I don't think anyone is currently proposing that is a disease with psychiatric involvement, but 30 years ago, they were exactly where we are now: no one knew what was causing symptoms, so psychiatric and psychological causes were presumed.

Not really the case. In the late nineteenth century neurologists were describing lesions in the CNS in what was later known as MS. Some attributed the symptoms to emotional trauma but they didn't have much impact on the debate as the years went on as far as I can see.

Certainly in the 1950s and 1960s things became much clearer. And I remember Jacqueline du Pre being diagnosed in the early 1970s - there was never any doubt she has a serious progressive neurological disease. She died from the illness in the 1980s.

Jenny
 

Firestormm

Senior Member
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Cornwall England
Not really the case. In the late nineteenth century neurologists were describing lesions in the CNS in what was later known as MS. Some attributed the symptoms to emotional trauma but they didn't have much impact on the debate as the years went on as far as I can see.

Certainly in the 1950s and 1960s things became much clearer. And I remember Jacqueline du Pre being diagnosed in the early 1970s - there was never any doubt she has a serious progressive neurological disease. She died from the illness in the 1980s.

Jenny

I just wanted to add (I realise I have a bad case of the verbals this morning, but...), we are talking - I am talking - about CLINICAL CARE for LONG TERM CONDITIONS. Many of which - most of which - are neurological in origin or presumed origin.

The record of healthcare - the allocation of funding and personnel resources - in the UK and around the globe, is, to put it succinctly - crap. This is widely acknowledged everywhere.

My little banner in bold above: Got ME? Live with it! is true of any long term condition for which there is no cure. I sometimes don't think enough notice of the 'system' and it's inherent inadequacies are recognised of by my fellow ME-er's. We are not by any means alone - or unique in this regard.

It is but one reason why I regard Lady Mar's voice in the debates alongside others with such conditions to be a great asset. However, the fact that resources are arbitrary across the nation does not mean I am suggesting we shrug our shoulders and don't demand better.

Just that we have to be realistic in our requests and engagements.

There are of course aspects of my ME that are widely acknowledged but seldom discussed - presumably because they are not 'juicy' enough. One is sleep dysfunction and the accompanying vivid dreams and recurrent (and associated) terror-mares.

Just one aspect that is directly related to ME that I find can only be currently helped by talking to someone about. Again, this in part helps to rule out other likely causes - but it is also beneficial in and of it's own. And if I am directed to a psychologist for this - then so be it. Just saying :)
 

Holmsey

Senior Member
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286
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Scotland, UK
It's a premise. If you accept (which I don't think you do) that at some point you or I might experience something so dire in our ability to cope that it leads to us becoming an inpatient in hospital under the care of a psychiatrist and mental health team; then a better way to achieve change and improvement in that care is to engage rather than to demand that we shouldn't be there.

'tis the season to be jolly.... :)

Firestormm is right, the best estimate is 1 in 4 will suffer a mental health issue in any given year -

1 in 4 people will experience a mental health problem in any given year.
This is the most commonly quoted statistic, and the one which has the most research evidence to support it. It came initially from a large scale study published first in 1980, then updated again 1992 This figure is further supported by the results of all three Adult Psychiatric Morbidity Survey
The breakdown below gives an overview of what treatment those who experience mental health problems are likely to seek and get:
  • around 300 people out of 1,000 will experience mental health problems every year in Britain
  • 230 of these will visit a GP
  • 102 of these will be diagnosed as having a mental health problem
  • 24 of these will be referred to a specialist psychiatric service
  • 6 will become inpatients in psychiatric hospitals.

Goldberg, D. & Huxley, P., (1992), 'Common mental disorders a bio-social model', London: Routledge
[ii] Meltzer et al (1995) ‘Surveys of psychiatric morbidity in Great Britain: Report 1’ HMSO: London

Given that these statistics reflect the prevelance not within ME/CFS but the general population, then how much more likely are we to require such care given the issues Firestormm touches upon in his post. Is it really in our interests to build barriers or resentment given our vulnarability. It's prudent to remember that society in general does not regard Psychiatry as the evil it is portrayed to be here, and that society is not at any time likely to vote to do away with it.

I'm also in complete agreement with Firestormm regarding the seperation of physical and mental, we would't function if they were not intrinsically connected, and moving forward it would be naive to think that medice won't increasingly uncover and recognise those connections.
 

Holmsey

Senior Member
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286
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I'm a bit confused with what we would gain from working with the people who run the Psych services side of thing.

As I don't need the Psych services then there is little that they can do to help me.

It's like trying to spend energy on changing a service that does nothing useful for us .... into one that still does nothing for us.

If nothing else then you would be contributing to an evidence base that there's nothing they can do for us. Right now I'm pretty sure the general impression is we're simply in denial and our reticense to engage taken as proof that we're in denial. Why not turn that on it's head, give them 250,000 patients and by their PACE claims they'd reduce that by a third in under a year, pretty hard to make it look like you've sent 83,000 people back to work or education when in fact they're still as ill as when you started.
 

Holmsey

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286
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[ even Wessley said his squad had found something, but of course they are not interested in physical abnormlities so he wouldn't follow these up in a million years. Time is running out for them I'm sure of that.

I was with you all the way until I read this, again the suggestion is that there's deliberate conspiracy to deny the truth and I just don't buy it. If it's not followed up it's due to cash, people and time, not a lack of interest.
 

alex3619

Senior Member
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13,810
Location
Logan, Queensland, Australia
Do one in four really have a mental health issue every year? Or is it that psychiatry is able to describe it that way based upon their hypotheses? This should not be considered as fact, but as a model of what is happening from a particular point of view. The model is not reality. Its a description that should be subject to scrutiny. Bad things happen in people's lives. People don't like it, and don't always respond well. Ergo they have mental health issues. If you believe that then life itself is a mental health issue. To me this is over-psychologization of everyday life. If DSM-V had not been edited and a number of proposed disorders withdrawn then most of us on PR would have a psychiatric disorder just because we post on PR. Its internet addiction. Let me remind people that under DSM-V nearly everyone with CFS or ME has a psychiatric disorder. Nearly everyone. Its called CSSD and so far as I am aware is still in DSM-V. Just because something is defined as psychiatric doesn't make it so. Psycho-psychiatry is very poor science, and psychosomatic psychiatry is based on multiple layers of logical fallacies.
 

alex3619

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If nothing else then you would be contributing to an evidence base that there's nothing they can do for us. Right now I'm pretty sure the general impression is we're simply in denial and our reticense to engage taken as proof that we're in denial. Why not turn that on it's head, give them 250,000 patients and by their PACE claims they'd reduce that by a third in under a year, pretty hard to make it look like you've sent 83,000 people back to work or education when in fact they're still as ill as when you started.

On this point I have some agreement. Given that some people with ME and CFS are going to engage in CBT/GET, why not set up a register for those who do? We could then independently track long term outcomes. This would be superior to retrospective surveys.

Personally they would not get me signing up however, nor would I recommend anyone do so. To encourage people to sign up is morally and ethically wrong in my view. Its tantamount to getting people to sign up for abuse and long term worsening of disability. That is unconscionable.