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

[TedBakerBoy]

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.?

 

[A.B.]

You are either being referred to a team that specialises in diagnosing rare and complex diseases, or to a team that specialises in diagnosing and treating the modern equivalent of demonic possession (psychosomatic illness).

 

[sarah darwins]

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.?

Sounds like you may have been referred to a Medically Unexplained Symptoms (MUS) team ... in which case, oh dear. See AB's post above.

There are a lot of MUS threads here. It's a voguish thing in the NHS which will, unfortunately, impact us more than most. It's total garbage.

 

[TedBakerBoy]

You are either being referred to a team that specialises in diagnosing rare and complex diseases, or to a team that specialises in diagnosing and treating the modern equivalent of demonic possession (psychosomatic illness).

I'm not possessed lmao Is that a joke or legit thing???!!!!

 

[A.B.]

I'm not possessed lmao Is that a joke or legit thing???!!!!

It's a joke. Psychosomatic illness seems to be the label that we apply to unexplained illness in the modern age. In medieval times, these would have been considered to be caused by unfavorable astral influences, demons, evil spirits, divine punishment, bad air, etc.

 

[TedBakerBoy]

It's a joke. Psychosomatic illness seems to be what we call unexplained illness in the modern age. In medieval times, these would have been considered to be caused by unfavorable astral influences, demons, evil spirits, divine punishment, etc.

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

 

[Esther12]

I'm not possessed lmao Is that a joke or legit thing???!!!!

Increasingly the NHS is trying to lump together everyone with symptoms they don't understand the cause of, and then cheaply 'manage' them by encouraging them to change the way they think about and respond to their symptoms. It generally seems to be pretty terrible.

There's a recent thread about it here, but it might assume some background knowledge to the issues: http://forums.phoenixrising.me/inde...ary-care-whats-happening-across-the-uk.48710/

It would be worth finding out from your GP exactly what this team is offering to provide you.

 

[A.B.]

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

They will probably try to convert you to their religion. By degrees.

 

[sarah darwins]

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

They won't do anything except try to convince you you're not ill.

 

[keenly]

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.?

The best thing to do on the NHS is get a diagnosis of something else, I.E POTS, then have your symptoms explored under that basis.

Have you explored that option?

 

[Hajnalka]

Hi @TedBakerBoy,

Did a quick google search (try NHS MUS + other words like your city) and they treat with e.g.:
Body Oriented Psychological Therapy
Psychoeducation
Mindfulness - MBSR

Apparently the team tries to convince you that it's all in your head and to "reduce health anxiety", so you do not stalk your GP anymore (they really say it's about minimizing frequent GP visits).

I think this says it all (in the presentation: http://mus.elft.nhs.uk/Resources/Psychoeducation):

How you think:
—Constant worrying about health
—Imagining the worst and dwelling on it
—Thoughts about illnesses and symptoms
—Concentrating on parts of your body and symptoms
—Thinking that (only) the doctor may be able to help
—Worrying that the doctor may have missed something
—A belief that unless you keep an eye on things you may miss signs of a serious illness
—Strong wish you could consult the doctor but fear he or she now thinks of you as a time waster or does not take you seriously

—What you do:
Go to the doctor’s surgery frequently
—Ask family and friends for reassurance about your symptoms
—Frequently check your body for symptoms such as lumps or bumps, tingling and pain
—Focus on one area of the body for changing sensations
—Avoid information on serious illnesses (e.g. TV)
—Seek out any information on serious illnesses, and check for those symptoms (books, Internet, TV)
—Act as if you were ill, for example, avoiding exertion or exercise, keeping near to home, resting

But I'm not from the UK and might be completely wrong.

 

[trishrhymes]

If it is an MUS team, from what I read, they will probably want to give you Cognitive Behaviour Therapy.

If you're lucky (relatively speaking) this will be to help you with coping strategies for chronic illnesses, if you are unlucky, it will be the sort of distorted CBT used by some psychiatrists, including in the infamous PACE trial, in which they will try to persuade you that your symptoms are the result of false illness beliefs - ie that they have no physical cause (which is bullshit).

If you are even more unlucky they will want to put you on a graded exercise therapy program in which they will try to persuade you to increase your activity levels each week and push through the symptoms you get as a result of doing too much. This can be severely detrimental to the health of anyone with ME which includes post exertional malaise.

These services are run by psychologists, nurses or occupational therapists, and do not involve doing any further medical investigations, though when you first go you may be assessed by a doctor.

It's worth finding out exactly what they are offering before committing yourself to the 'treatment'. You do not have to go along with anything you are offered if you think it will not be helpful to you.

 

[Hajnalka]

The MUS team I found in London apparently uses graded activity/graded exercise as treatment (also in the presentation: http://mus.elft.nhs.uk/Resources/Psychoeducation):

For many people living with physical symptoms the issue of taking part in activities that require them to take exercise can become troublesome.
—Working to increase helpful activity and behavior can help to make lots of physical symptoms to improve and can also help to overcome stress.
—Evidence from the Mental Health Foundation document ‘Moving on Up’ published in 2009 lets us know that regular exercise can help you to stay well.
—Exercise can also relieve stress by making you feel good about mastering a new skill, as well as improving your fitness and energy levels.

—Try to exercise for about 20 – 30 minutes, three to five times a week, at a pace that leaves you slightly out of breath. It’s good for you, and forms part of a healthy lifestyle.
—Make sure that you enjoy yourself. You will be more likely to keep it up if you do. Ask a friend to join you, or join an exercise class or group. Local libraries and notice boards in shops, supermarkets and surgeries often have information about what is available in your area.
—Aim to make exercise part of your weekly routine. Remember exercising in the evening can be very energising and can adversely affect your sleep. Exercise in the morning can be very good for people who struggle with sleep.

Again:

 

[trishrhymes]

But I'm not from the UK and might be completely wrong.

sadly, you're not wrong, Joh. It's a total nightmare. All total bollocks.

and you second post about people being encouraged to do all that exercise is potentially dangerous for people with ME.

So many people with ME have been harmed by exercise therapies. It's criminal recommending them.

 

[A.B.]

How you think:
—Constant worrying about health
—Imagining the worst and dwelling on it
—Thoughts about illnesses and symptoms
—Concentrating on parts of your body and symptoms
—Thinking that (only) the doctor may be able to help
—Worrying that the doctor may have missed something
—A belief that unless you keep an eye on things you may miss signs of a serious illness
—Strong wish you could consult the doctor but fear he or she now thinks of you as a time waster or does not take you seriously

That's a pretty good description of the normal behaviour under the circumstances of having an undiagnosed illness with substantial negative impact on one's life (especially when the illness began recently and the person has not adjusted to it yet).

Yet under the MUS paradigm, this is labelled as mental disorder. They claim this is the CAUSE of the symptoms, not the consequence, but they cannot prove that their bizarre upside-down interpretation is correct. It really comes down to belief.

This quickly becomes amusing (or shocking, depending on the perspective) once one learns that in the past medicine has falsely labelled dozens, if not hundreds of illnesses as psychosomatic. They really thought that for example rheumatoid arthritis was the result of emotional and mental problems rather than due to autoimmunity. Their explanation was something involving mental and emotional conflicts being expressed as muscle tension which then supposedly deformed joints, causing pain and inflammation.

 

[TedBakerBoy]

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

 

[Hajnalka]

sadly, you're not wrong, Joh. It's a total nightmare. All total bollocks.

and you second post about people being encouraged to do all that exercise is potentially dangerous for people with ME.

So many people with ME have been harmed by exercise therapies. It's criminal recommending them.

Thanks Trish! Sorry, I worded that badly, I know of the dangers of GET and (the creepy ME-version of) CBT and absolutely second you of course. Meant it more in the sense that as a German I shouldn't be the one to listen to if you try to decide if you check out your local UK MUS service. Yep, it's all indeed!

 

[trishrhymes]

@TedBakerBoy , welcome to the ME world. Of course we are assuming you actually have ME/CFS. Do you want to tell us a bit more about that?

Stick around here on PR, you're in good company and there's lots of good advice about managing your symptoms. Also, don't give up hope - there is some excellent biomedical research going on, a lot could change in the next couple of years on both diagnosis and treatment.

Meanwhile, learn as much as you can, rest as much as you can, and come back here with more questions if you want to.

You might want to buy the ME Association's purple book, or join the MEA and get a free copy. And they will send a copy to your GP if you ask them to.

 

[antherder]

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

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.)

 

[NelliePledge]

Hi BB has your doctor explained why you need to be referred to this team? NICE guidelines arent that good but they do give GPs info on how to diagnose CFS/ME dont need to be referred to anyone else if you meet the criteria. https://www.nice.org.uk/guidance/cg53/chapter/1-Guidance#diagnosis
If you're getting referred anywhere it should be to NHS CFS/ME specialist clinic see 1.5 in the guidelines - albeit that will still just be for help with "managing the condition". Very unusual that your GP has actually used the term unexplained symptoms as they are trained not to because people dont like it for some unexplained reason . A lot of GPs arent too good on ME but if you're not getting anywhere with yours you can change. I had a similar experience to you see these posts
http://forums.phoenixrising.me/inde...-for-drs-first-appointment.48616/#post-800133
http://forums.phoenixrising.me/inde...ening-across-the-uk.48710/page-17#post-804252

boils down to being all about saving money because they think you will go away after the sausage machine Medically Unexplained Symptoms/increasing access to psychological therapy cheapo CBT having set yourself some goals increased your activity and miraculously improved

if you've got ME symptoms particularly post exertional malaise you should get ME/CFS diagnosis according to NICE guidelines easy for me to say now after I fell into the sausage machine.

you cant be forced into any treatment but obviously depends on your GPs attitude how that will affect your relationship going forward

good luck
NP