For those who attend the UK's Fatigue Clinics: what your therapist is told/believes

[Sean]

Centrelink in Australia is now denying benefits to those with ME/CFS on the basis that they are not fully treated and stabilised if they haven't had CBT and GET.

 

[hixxy]

Centrelink in Australia is now denying benefits to those with ME/CFS on the basis that they are not fully treated and stabilised if they haven't had CBT and GET.

That's interesting. I take it this change happened during Abbott's time as PM? I hadn't heard of anyone having to do CBT/GET in order to be fully treated and stabilised but then again I don't think they're very consistent.

I had a review done a bit over a year ago because I was under 35 and they didn't expect me to do it either despite never having had CBT or GET. I wonder if they're only expecting it for new applications. I'm too sick to even attend Centrelink or one of their contractors so I do everything over the phone (they don't seem too keen on home visits) so I wonder if that had something to do with it.

 

[Sea]

@hixxy I've heard of about 4 people in the last few months given that reason. I think one was a new application, the others were reviews. You're right, they're not consistent in how they approach assessments, but it is still very concerning.

 

[RuthT]

They aren't honestly informed about the beliefs and aims of the clinics.

Yes, and not by the clinician either, when I asked. Was referred and decided to try as was NICE Guidance, was aware in general terms of controversy but thought I'd take a look and see. A big mistake, wasted time & effort. The therapist did not listen well, even on his own terms, making major and minor factual errors in a very late pre-treatment assessment report. Fortunately had my GPs full support to discharge self from clinic.

 

[Woolie]

Some psychs would have it that a patient's claim, or even objective evidence obtained by a clinician, that there is "nothing to get you on" is itself evidence that there is something to get you on. Have a look at the research into so-called alexithymia, which, according to clinical psychologist Richard Gipps, can be defined as a "diminished recognition of one's own emotions". It's a classic damned-if-you-do damned-if-you-don't situation that belongs to the realms of Kafkaesque fiction.

Alexithymia. What a crock of circularity and moral judgement. The central idea is that its a 'bad thing' if you can't describe your feelings, or are poor at identifying feelings in others. According to the theory, this leads you to have a generally miserable life, and you are doomed to that misery because you will be unresponsive to therapy.

People with an autism spectrum disorder diagnosis score high on the so-called alexithymia scales (that's a problem for some other time). But lots of other people get snared into the net too. Not surprisingly, when you look at the items. The Toronto Alexithymia Scale (TAS) includes items like:

"I prefer to analyse problems rather than just describe them"
"I prefer to talk to people about their daily activities rather than their feelings"
"I can feel close to someone even in silence"

Its the usual mess where you take a basic idea - which doesn't actually involve any of the elements in the items I just listed above - then you find it correlates with other things not part of original concept (like the items above), and the concept itself starts to morph to include these things. The new concept is then assumed to be coherent - even though its demonstrably not, given that factor analysis of the TAS reveals three separate factors.

Then the idea gets a momentum all of its own, and there's nothing that can slow that down. It becomes "real".

Then come the usual confusions of cause and effect. If you look at the wikipedia page on Alexithymia, you would get the impression that this sort of 'emotional illiteracy' is the cause of all the world's ills, including many psychological/psychiatric conditions, and of course many types of medically unexplained symptoms. But look at these items:

"I have physical sensations that even doctors don't understand"
"I am often puzzled by feelings in my body"

Notice how these items actually directly ask about medically unexplained symptoms, so no wonder scores on this questionnaire are higher in those with MUS. That's a description of the measure itself, not a meaningful statement about the relationship between emotional insight and physical symptoms.

And more generally, once the concept has taken on a life of its own, no-one stops to consider reverse causal relationships. Its very likely that psychological distress/medical ill health actually affects people's responses to these questions.

There is also a weird circularity in some of those questionnaire items that seem to measure the alexithymia concept most directly. Take this example:

"When I am upset, I don't know if I am sad, frightened or angry"

You can only respond positively to this item if you have a fair degree of insight into your feelings to start with.

It all just makes you want to ring your hands in despair.

 

[Sean]

Unfortunately, the problems with psych go way beyond just ME and MUS. The whole field needs to go back to basics and start again.

And if they don't do it willingly, they must be forced to.

 

[trishrhymes]

Alexithymia. What a crock of circularity and moral judgement. The central idea is that its a 'bad thing' if you can't describe your feelings, or are poor at identifying feelings in others. According to the theory, this leads you to have a generally miserable life, and you are doomed to that misery because you will be unresponsive to therapy.

People with an autism spectrum disorder diagnosis score high on the so-called alexithymia scales (that's a problem for some other time). But lots of other people get snared into the net too. Not surprisingly, when you look at the items. The Toronto Alexithymia Scale (TAS) includes items like:

"I prefer to analyse problems rather than just describe them"
"I prefer to talk to people about their daily activities rather than their feelings"
"I can feel close to someone even in silence"

Its the usual mess where you take a basic idea - which doesn't actually involve any of the elements in the items I just listed above - then you find it correlates with other things not part of original concept (like the items above), and the concept itself starts to morph to include these things. The new concept is then assumed to be coherent - even though its demonstrably not, given that factor analysis of the TAS reveals three separate factors.

Then the idea gets a momentum all of its own, and there's nothing that can slow that down. It becomes "real".

Then come the usual confusions of cause and effect. If you look at the wikipedia page on Alexithymia, you would get the impression that this sort of 'emotional illiteracy' is the cause of all the world's ills, including many psychological/psychiatric conditions, and of course many types of medically unexplained symptoms. But look at these items:

"I have physical sensations that even doctors don't understand"
"I am often puzzled by feelings in my body"

Notice how these items actually directly ask about medically unexplained symptoms, so no wonder scores on this questionnaire are higher in those with MUS. That's a description of the measure itself, not a meaningful statement about the relationship between emotional insight and physical symptoms.

And more generally, once the concept has taken on a life of its own, no-one stops to consider reverse causal relationships. Its very likely that psychological distress/medical ill health actually affects people's responses to these questions.

There is also a weird circularity in some of those questionnaire items that seem to measure the alexithymia concept most directly. Take this example:

"When I am upset, I don't know if I am sad, frightened or angry"

You can only respond positively to this item if you have a fair degree of insight into your feelings to start with.

It all just makes you want to ring your hands in despair.

Brilliant summary. That should be framed and put on the wall of every psychiatrists and psychologists office.

I become more and more disillusioned with the whole field of psychology/psychiatry. They just seem to make stuff up. And so judgemental.

 

[char47]

I'm a therapist, and I know how to engage in critical thinking. If you try a technique/therapy with a patient and it doesn't work, then you need to think 'why not?' The answer is always that it's the wrong therapy, not that the patient hasn't tried hard enough.....
If the patient actually hasn't tried, then it's still the wrong therapy.

well i clicked 'like'... but where's the 'love' button

 

[Philipp]

"I prefer to analyse problems rather than just describe them"
"I prefer to talk to people about their daily activities rather than their feelings"
"I can feel close to someone even in silence"

Interestingly, I am pretty sure that my dad and his entire generation would call this condition 'being male'.

One can also make Barnum-statements out of these sentences pretty easily:
'I usually prefer to analyze problems rather than just describe them. If I am unfamiliar with or feel overwhelmed by a problem I sometimes just describe it to another person to get their insight.'
'I usually prefer to talk to people about their daily activities rather than their feelings. When I talk to a close friend or family and somethings seems to be bothering them, I often do ask them how they feel.'
'I can feel close to someone even in silence, but usually prefer to keep some conversation going.'

And what a unique little snowflake one must be to be accurately described by this.

 

[Invisible Woman]

When I am upset, I don't know if I am sad, frightened or angry"

This is the main reason I no longer have any truck with questionnaires. They ask leading and biased questions or questions that can read as one thing & then be interpreted as another.

 

[Snow Leopard]

This is the main reason I no longer have any truck with questionnaires. They ask leading and biased questions or questions that can read as one thing & then be interpreted as another.

Exactly. The questionnaires are designed to be skewed to support the preconceived constructs of the researchers, rather than the true underlying factors.

 

[Deepwater]

They say Assume rather a lot of times, oh, wait a minute is that because they have to assume and guess because it's just an idea they floated from the sky and there is no evidence for what so ever.

Don't any of the therapist have the brains to ask why they are assuming everything about these patients.

In my experience - no. Let's be kind to them and blame the education system.

 

[Snowdrop]

If I may put a different slant on this topic. Whilst I totally agree with all the members above comments, I think there is some positives to be taken from these clinics.

After having a serious relapse around 7 years ago my doctor suggested I could attend a clinic that ran one afternoon a week for about 8 weeks. Bewildered by the catastrophic change in my health I pushed myself to attend. What it did give me was more of an insight into the illness and suggested ways of coping with it. Meeting other people on the course who were in the same boat so I did not feel so isolated. It got me out of the house with some effort.

I guess the downside is that once the course had finished, that's it, back to square one and totally forgotten about again. Also I am sitting on my bed in the middle of the day, 6 years on, no recovery, hey ho. Apologies if have veered off topic. The advice the clinic gave was I am sure well intentioned and the lady had had ME to some degree as well and was not completely recovered.

You would have learned to cope anyway. That's what happens naturally as you adapt to life changing situations. Humans are adaptable. Also, there is better/more/helpful advice here on PR than you can get from any clinic. NO they are not necessary and they perpetuate the idea that we should accept coping as our only option. How about spending the money on research and real treatment. These clinics are a menace and people with ME deserve better than being offered this sop.

 

[Woolie]

One can also make Barnum-statements out of these sentences pretty easily:
'I usually prefer to analyze problems rather than just describe them. If I am unfamiliar with or feel overwhelmed by a problem I sometimes just describe it to another person to get their insight.'
'I usually prefer to talk to people about their daily activities rather than their feelings. When I talk to a close friend or family and somethings seems to be bothering them, I often do ask them how they feel.'
'I can feel close to someone even in silence, but usually prefer to keep some conversation going.'

Great analysis, @philip!

 

[Mithriel]

There is a terrible irony here. For most people who feel they have had a positive effect from these clinics (that I have seen on the forums anyway) it comes from meeting other patients and finding suppport, understanding and friendship. Yet being a member of a patient organisation has long been given as a risk factor for not getting better... So as long as it is called a CLINIC and not a SUPPORT GROUP that is fine

 

[Snowdrop]

Also, for those who can still get out to a clinic there's irony in the fact that there is a need to connect because of isolation-- that isolation exists because the psychosocial school set it up so that friends, relatives, and colleagues would not believe that ME is a real biological illness thus reinforcing the 'you need to go to an ME clinic for proper treatment'.

The trauma of this illness and the invalidation of what we experience leaves us wide open to feelings of gratitude and relief when at a clinic they use soothing words and we are finally brought together with others who are going through the same experience.

If they had not co-opted the narrative of the illness and had looked scientifically for answers without all the dogma all those people who are meant to be our support structure would have prevented some of the isolation that has been experienced.

This is why I say the clinics no matter what 'good' any one person might find from the experience are not fit for purpose. It's not an issue of throwing the baby out with the bathwater. It's a matter of leaving an abuser no matter that they can be charming, engaging and even offer us the occasional treat.

I know it's not easy for some to view it that way. It's not a bad thing to see good in people or to find the good in an experience. It's a matter of assessing the whole and forming a judgement as to what will lead to the best outcome for the future IMO.

 

[Invisible Woman]

Also in the UK there may be some confusion:

Many PCTs now called CCGs -basically healthcare admin regions ran Expert Patient Programmes which ran for about 8 weeks. So it was a few hours once a week.

This is not the same as attending a CFS or Fatigue Clinic.

It was to provide more of an overview of coping with long term conditions and providing info on how to interact with the NHS rather than treatment or medical care. They were run for a variety of long term conditions including MS (some groups may have had patients with more than one diagnosis).

 

[ash0787]

90% of them just try to deceive you, its sad, the other 10% are well meaning but they are not able to help so they end up getting annoyed eventually, even outside of CFS they will try and trick you, I said I thought I might have had a kidney infection as per the symptom description on the NHS website and they gave me an antibiotic which only works in urine, it doesn't affect organs or blood, its like they think we cant read wikipedia or something.

 

[anni66]

And now the evidence is stacking up against it
http://www.meassociation.org.uk/201...on-two-day-cpet-in-m-e-and-ms-29-august-2017/

 

[Large Donner]

Interestingly, I am pretty sure that my dad and his entire generation would call this condition 'being male'.

Then they definitely need government intervention, we are all gender neutral now.