UK CFS PATIENTS HAVE YOU HEARD OF SUCH A THING IN THE NHS????

[Jonathan Edwards]

I agree with the general drift of the posts above. As a professor of medicine my view is that 'medically unexplained symptoms' as a 'diagnosis' or speciality is drivel. There are lots of medically unexplained symptoms around but that is not what this is about. They are just symptoms we do not fully understand. It seems clear that 'MUS' is a codename for 'the patient thinks they are ill but they are not'. The extraordinary thing to me is that doctors should think that they can have names like this and put them on clinic doors. Do they think the patients are complete idiots? Yes, I guess they do. They are supposed to be skilled in psychology yet what sort of skill in psychology allows you to say to patients that they are being seen for a disease which consists of them being silly enough to think they have a disease they have not got.

This sort of BS started way back in the 1990s but has gathered pace (or even PACE). It is a symptom of the general dumbing down of medicine that has occurred recently, nd also the pseudo-commercial framework that has taken over the NHS.

How you handle this I really do not know. But you could say that a professor of medicine at UCH who is a friend of yours says that MUS is bullshit - could they please explain why he is wrong?

 

[hellytheelephant]

I've been going back and fourth to my GP recently in the U.K with no further improvement nor diagnoses. She's referred me to an unexplained medical team on the NHS, I have never heard of such a thing before, has anyone ever heard of anything like this on the NHS.?

Sorry to ask- but do you have a diagnosis of ME/CFS?

 

[NelliePledge]

Hi BB just looked at some of your other posts maybe if you can afford it going to see Prof Chaudri in Glasgow would be a good way to go to see about getting a diagnosis. I think you would need to tell him about the very low dose of prednisone you're taking and the benefits you've been experiencing.

 

[JohnM]

@TedBakerBoy
I can only echo comments above ..

It might also be worth posting a reply on the following thread started by @Dx Revision Watch, if you are able?

MUS, PPS services and integration into NHS primary care - what's happening across the UK?

No wish to hijack your thread, but think it useful to mention that I've just received results back from private blood tests I'd arranged earlier in the week, as my GP and/or consultants would not order them.

Unsurprisingly to myself, given my family history of which they are fully aware, a FULL thyroid panel showed I'm positive for both THYROGLOBULIN ANTIBODY and THYROID PEROXIDASE ANTIBODIES, and borderline Hyperthyroid .. beyond basic bloods, in this case TSH, I would likely still be none the wiser years hence?

As I example above, it is this 'unwillingness' to accept patient-reported symptoms, and/or (all too often) to go beyond the use of basic bloods and the like as a diagnostic tool of choice, that other (comorbid?) conditions can be more reliably ruled in or out, and/or will be missed.

As others have commented above, you can be sure that MUS services would not undertake further investigations, as it would only encourage our 'false illness' beliefs, poor deluded things that we are, NOT!

// End rant

Wishing you and all, improved health and happiness.

 

[arewenearlythereyet]

That's the job of the MUS team, to help you, and all of us, discover the shiny happy healthy people within, by shedding the paralysing cocoons of our false illness beliefs...

They just want us to be butterflies, to spread our wings and fully embrace all the hope and joy life has to offer...

Don't you want to be a bitterfly too?

(Leaving that typo, because it amuses me.)

I think that's a contenda for PR mascot

 

[Hajnalka]

Haha, thanks for creating bitterflies @antherder and @arewenearlythereyet, perfect! I'm sure even grumpy cat would approve of bitterflies!

Sorry @TedBakerBoy, for being OT.

 

[JohnM]

..

This sort of BS started way back in the 1990s but has gathered pace (or even PACE). It is a symptom of the general dumbing down of medicine that has occurred recently, nd also the pseudo-commercial framework that has taken over the NHS.

How you handle this I really do not know. But you could say that a professor of medicine at UCH who is a friend of yours says that MUS is bullshit - could they please explain why he is wrong?

As I think you imply, given my own experiences with GP's and Consultants from a range of disciplines to date, suggests that too many are fully signed up members of the BS that is the BPS model of illness, as applied to MUS. Unfortunately for too many patients, this BS is not restricted to just psychiatry and psychological departments, it would seem.

I will make sure to ask your question as and when I next get the opportunity .. thank you.

 

[alex3619]

MUS is code for we don't know what is wrong with you, but with a side of you need to be managed as a psych patient, and not treated. In the history of medicine claims that specific disease states are psychosomatic have an unmitigated failure rate. They have been proven wrong a great many times. They have been proven right ... not even once.

Unless there is some kind of misunderstanding going on, then if it were me I would have nothing to do with a medically unexplained symptom treatment group. Do find out for sure what group is being suggested though.

Now in the USA if you have a mystery illness and are very lucky there is at least one research hospital, at Bethesda, that can run just about every known test. Sadly they can only do this on a small number of patients at a time, and do not always figure the illness out, but that is the kind of team that has a chance of finding something. Currently they are planning to do this with a number of ME patients.

Meanwhile there is a difference between not having a diagnostic test, such as with ME, and being unable to find problems if you run tests. Typical tests that are undervalued and often find issues in ME patients are the tilt table test, quantitative EEG, 2 day CPET protocol, and a sleep study. Every patient with suspected ME should at least have a sleep study, as some sleep disorders can be treated. Both the TTT and the CPET can have negative consequences, but the qEEG and sleep studies are relatively innocuous.

However for other disorders you need other tests, and there are a great many possible tests out there, most of which are not easily available. Under treatment guidelines they also might not be approved.

 

[trishrhymes]

I agree with the general drift of the posts above. As a professor of medicine my view is that 'medically unexplained symptoms' as a 'diagnosis' or speciality is drivel. There are lots of medically unexplained symptoms around but that is not what this is about. They are just symptoms we do not fully understand. It seems clear that 'MUS' is a codename for 'the patient thinks they are ill but they are not'. The extraordinary thing to me is that doctors should think that they can have names like this and put them on clinic doors. Do they think the patients are complete idiots? Yes, I guess they do. They are supposed to be skilled in psychology yet what sort of skill in psychology allows you to say to patients that they are being seen for a disease which consists of them being silly enough to think they have a disease they have not got.

This sort of BS started way back in the 1990s but has gathered pace (or even PACE). It is a symptom of the general dumbing down of medicine that has occurred recently, nd also the pseudo-commercial framework that has taken over the NHS.

How you handle this I really do not know. But you could say that a professor of medicine at UCH who is a friend of yours says that MUS is bullshit - could they please explain why he is wrong?

Another one for the quote collection! Thank you so much. You cheer me up more than you can imagine, @Jonathan Edwards

 

[antherder]

I think that's a contenda for PR mascot

It's more than that. It's now the new title of my memoir;

Flightpath of a Bitterfly

 

[hellytheelephant]

False Illness Belief.....so that would be a FIB then ( them not us!)

 

[A.B.]

Mr Dauer is sad he isn't considered as mascot:

PS: Ehlers-Danlos syndrome was in the news today since the illness definition was updated. I noticed that an EDS patient organisation had a zebra as mascot (zebra being medical slang for rare disease). One news bit said that EDS is the most ignored disease. I think we could have a vigorous debate with EDS patients on that point

 

[Aurator]

She's referred me to an unexplained medical team on the NHS, I have never heard of such a thing before, has anyone ever heard of anything like this on the NHS.?

I'd echo what others have said, TedBakerBoy.

An NHS Medically Unexplained Symptoms department isn't there to medically explain your illness; that might take a lot more time and money than they're willing to give you. It's there to unmedically explain it and fob you off.

 

[trishrhymes]

Do let us know what happens next, @TedBakerBoy.
It will be interesting to hear what the referral actually involves.

As you will have noticed from the large response to your question, we here on PR tend to go a bit mad when anyone mention MUS. I mean mad at the nonsense behind it, not mad at you. You have our full support and sympathy.

 

[TedBakerBoy]

Hi i'll respond to all the questions together rather than quoting separately. 1. No I've never been diagnosed with anything which is BS as i have every symptom of CFS/ME. 2. My GP never told me much info apart from it's a department for unexplained medical conditions. 3 Yes i plan to see Dr Chaudhury very soon to get answers on my unexplained CFS/ME. 4. The low dose Pred is working wonders but it's only masking my problems which i want to get to the bottom of.

 

[Aurator]

1. No I've never been diagnosed with anything which is BS as i have every symptom of CFS/ME.

The snag is, to an MUS team CFS/ME is BS.

MUS is on the up and up.
Here's a recent document, for anyone who's got the stomach for it:
http://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf


To give you a flavour of it, here's a case study taken from the document:

"Yorkshire Centre for Psychological Medicine (YCPM)43

The YCPM is an eight-bedded specialist inpatient unit at Leeds General
for people with complex medically unexplained symptoms and physical/ psychological co-morbidities. YCPM takes UK-wide referrals from multiple commissioners on a cost per case basis, and provides expert multidisciplinary bio-psychosocial assessment and treatment.

Patients with very severe levels of disability and illness are admitted regardless of the bodily system(s) involved, and without a requirement for them to engage with any particular elements of treatment before they are admitted..

Typically, patients are:

• bed-bound and highly dependent upon others for feeding, toileting, and personal hygiene
  
  
• tube-fed and/or catheterised
  
  
• taking numerous medications (many without a clear biological or organic basis) and dependent upon opiate and other analgesics
  
  
• living in such a manner that every moment of their daily life is determined by their illness.
  
  The service provided includes a bio-psychosocial assessment, with regard to
  the range of symptoms and a formulation of the nature of the presentation, including aetiological factors and in particular perpetuating/maintaining factors, across physical and psychosocial aspects. This is followed by physical and occupational rehabilitation including:

• psychotherapeutic interventions as indicated
  
  
• biological treatments (for both physical and psychological/psychiatric comorbidities)
  
  
• addressing and reversing iatrogenic elements
  
  
• addressing and reversing secondary consequences of chronic physical illness.
  
  All of these interventions are carried out in a recovery-focused programme. It is this multi-dimensional approach, delivered by an expert team in an appropriate inpatient setting, which allows progress, which had not been possible before, to be made.
  
  Clinical outcomes, even in a range of very chronic and complex cases, are often very good, and attract positive patient feedback. This is possible due to the nature of the YCPM Unit and its function within the general hospital setting, and to to the depth of experience and breadth of expertise within the team."

And here's the evidence that they take people with diagnoses of ME/CFS:
http://www.leedsandyorkpft.nhs.uk/our_services/Specialist-LD-Care/YPCM

 

[FMMM1]

I agree with the general drift of the posts above. As a professor of medicine my view is that 'medically unexplained symptoms' as a 'diagnosis' or speciality is drivel. There are lots of medically unexplained symptoms around but that is not what this is about. They are just symptoms we do not fully understand. It seems clear that 'MUS' is a codename for 'the patient thinks they are ill but they are not'. The extraordinary thing to me is that doctors should think that they can have names like this and put them on clinic doors. Do they think the patients are complete idiots? Yes, I guess they do. They are supposed to be skilled in psychology yet what sort of skill in psychology allows you to say to patients that they are being seen for a disease which consists of them being silly enough to think they have a disease they have not got.

This sort of BS started way back in the 1990s but has gathered pace (or even PACE). It is a symptom of the general dumbing down of medicine that has occurred recently, nd also the pseudo-commercial framework that has taken over the NHS.

How you handle this I really do not know. But you could say that a professor of medicine at UCH who is a friend of yours says that MUS is bullshit - could they please explain why he is wrong?

I agree with all of the above.

An international collaboration led by scientist at Queens University Northern Ireland have just announced a discovery re the "repair mechanism" for myelin in multiple sclerosis (an autoimmune disease). I recall a TV play where a woman is trying to get a diagnosis and prognosis for what is now referred to as MS; possibly broadcast about 30 years ago. Doctors didn't have a diagnostic test or an understanding of the disease mechanism in MS at that time. The position is similar today for people with ME/CFS. Hopefully we can see further progress re ME/CFS so that people with this disease(s) are treated appropriately and avoid this indignity.

 

[CFS_for_19_years]

You guys aren't filling me with hope and joy LOL.

No, but we are re-adjusting your expectations of what you were hoping to find. Exotic blood tests? Not a chance. A real diagnosis of some malady.....nah.

We may have saved you from finding out what GET and CBT were like in person. And maybe for that you can feel a smidgen of joy for having being told the truth before you wasted any of your time there.

 

[arewenearlythereyet]

The snag is, to an MUS team CFS/ME is BS.

MUS is on the up and up.
Here's a recent document, for anyone who's got the stomach for it:
http://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf


To give you a flavour of it, here's a case study taken from the document:

"Yorkshire Centre for Psychological Medicine (YCPM)43

The YCPM is an eight-bedded specialist inpatient unit at Leeds General
for people with complex medically unexplained symptoms and physical/ psychological co-morbidities. YCPM takes UK-wide referrals from multiple commissioners on a cost per case basis, and provides expert multidisciplinary bio-psychosocial assessment and treatment.

Patients with very severe levels of disability and illness are admitted regardless of the bodily system(s) involved, and without a requirement for them to engage with any particular elements of treatment before they are admitted..

Typically, patients are:

• bed-bound and highly dependent upon others for feeding, toileting, and personal hygiene
  
  
• tube-fed and/or catheterised
  
  
• taking numerous medications (many without a clear biological or organic basis) and dependent upon opiate and other analgesics
  
  
• living in such a manner that every moment of their daily life is determined by their illness.
  
  The service provided includes a bio-psychosocial assessment, with regard to
  the range of symptoms and a formulation of the nature of the presentation, including aetiological factors and in particular perpetuating/maintaining factors, across physical and psychosocial aspects. This is followed by physical and occupational rehabilitation including:

• psychotherapeutic interventions as indicated
  
  
• biological treatments (for both physical and psychological/psychiatric comorbidities)
  
  
• addressing and reversing iatrogenic elements
  
  
• addressing and reversing secondary consequences of chronic physical illness.
  
  All of these interventions are carried out in a recovery-focused programme. It is this multi-dimensional approach, delivered by an expert team in an appropriate inpatient setting, which allows progress, which had not been possible before, to be made.
  
  Clinical outcomes, even in a range of very chronic and complex cases, are often very good, and attract positive patient feedback. This is possible due to the nature of the YCPM Unit and its function within the general hospital setting, and to to the depth of experience and breadth of expertise within the team."

And here's the evidence that they take people with diagnoses of ME/CFS:
http://www.leedsandyorkpft.nhs.uk/our_services/Specialist-LD-Care/YPCM

Wish I hadn't read it now....Incentive never to visit the doctor again.....I wonder whether they put you in a straight jacket while they brainwash you?

 

[Valentijn]

What does the MUS team actually do then? Unorthodox blood tests etc...?

They would do the opposite - they would avoid all biological testing, and minimize your contact with doctors. They'd probably tell some nice lies about how real and awful they believe that your symptoms are, then go to work on undermining your awareness of your own body. If you bring any family members along, they'd try to convince them not to support your illness.

They'd attempt to isolate and brainwash you, just like any other sick cult.