We have been contacted by a Counselling Psychologist-in-training at the University of Roehampton who is looking to interview individuals who are living with medically unexplained symptoms (MUS). The aim is to explore their experiences of counselling and psychological therapies. The term “medically unexplained symptoms” is the umbrella term given by the NHS for a number of long-term and chronic conditions - some examples include; chronic fatigue, fibromyalgia, dizziness, skin conditions and more.
The aim of the research is to look at how those with MUS experience psychological therapies and the impact it may have had; whether psychological therapy has a role in enabling those living with MUS to derive meaning behind their symptoms; and whether the experience of psychological therapies promoted self-management of symptoms.
Gaining a better understanding of participants’ experiences of psychological therapies and if or how they may have impacted the physical symptoms will hopefully help to improve the quality of the provisioning available.
To take part in this research, you will need:
• to be aged of 18 to 69
• to have held a diagnosis of at least one category of MUS i.e. fibromyalgia, chronic fatigue or
others for at least six months
• to have undergone psychological therapy related to your condition for a minimum of 6 sessions
• to not have a current alcohol or drug addiction, or a current or previous psychiatric diagnosis
such as schizophrenia spectrum disorders, bipolar disorders or psychosis.
If you would be interested in taking part in this research, please contact me at alida@lupusuk.org.uk or 01708 731251 and I will then forward the patient information sheet to you.
Thank you.
Alida
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Alida_Bennett
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Interested to know if those examples are from the researcher or lupus U.K.? E.g classifying fibromyalgia as medically unexplained?
Most of these historically ‘medically unexplained’ symptoms often have a perfectly valid medical explanation once research has caught up. There was a recent article published that talked about those symptoms that doctors/ research cannot YET explain as ‘medically NOT YET explained’ symptoms. I think that’s probably a better approach as how many of our symptoms as lupus patients were not initially explained but made perfect sense once the dots were joined?
MUS is tricky territory to research and often more related to doctors/ science’s ignorance. The researcher needs to be cautious about labelling. Many people with CFS or fibromyalgia are mis-labelled with these diagnosis (as those symptoms are a part of the lupus/ autoimmunity) and many others find them perfectly acceptable co-diagnosis that are ‘medically explained’. There’s a move away from classifying these as medically unexplained as science improves its understanding and filters down to doctors!
And classifying lupus patients (or lupus patients who are not yet diagnosed) with MUS and providing psychological therapy can be a dangerous (and demoralising - as it’s where many people here got their ‘all in your head’ type of diagnosis) route when they need immunosuppression. Although psychological therapy is of course helpful for most with a chronic disease and unpleasant symptoms. But only in addition to the treatment for the disease that often underlies these MUS symptoms.
I’d warn the researcher to make sure these areas have been carefully thought out and fully discussed with patient reps and clinicians before interviewing!
Couldn't agree more. Please also point them to the recently updated NICE guidelines for M.E. which now explicitly says CBT shoulld only be offered as a means of helping a person with ME come to terms with being chronically ill, not as some form of cure (as it was previously offered along with graduated excercise therapy). They go as far as saying CBT can be potentially harmful if not positioned correctly. See nice.org.uk/guidance/ng206/... and nice.org.uk/guidance/ng206/... .
Edit after some further thoughts on this - If they really want to make a difference for people with chronic conditions, please can they focus on biomedical research so we can actually get effective treatments or even a cure!?
This type of research is important too in terms of helping people with all these diseases live the best life they can - and often counselling, more support etc can be very helpful. Especially when a cure is very unlikely.
But just being very cautious people don’t get pushed down a counselling etc route for currently unexplainable symptoms just because the doctors don’t understand them. As the guidelines you shared say so well, psychology support as an addition to treatment and to adapt lives and not that it’s saying the symptoms are psychological -just everyone needs help psychologically when they have such difficult diseases to live with.
When you are of sound mind and do not need psychological therapy it can be equally damaging, even though positive for those who do need it, also like a pill , it affects people differently.
Of course there's stress and frustration with or without diagnosis, but many diagnosed with MUS have not even had full testing to warrant a mus diagnosis. An interested doc, clinical face to face meetings, skin biopsies, muscle biopsies etc , diagnostic tests, could help rule out the MUS diagnosis for many. I speak for myself as Ive not been seen by appropriate departments , I see a rheumy who was appalling and offered fibre and mud as diagnosis after no effort to deal with problems and discharged me. From then over 5 years I have deteriorated with symptoms and of course covid has been detrimental. I never had a biopsy that was said would be done, ive not seen the neurologist and ive waited since 2020 said to happen in 2024, I never had 24 hr urine test because specialist ordered in covid times and local gp did not want to give container when she hadn't ordered test (ludicrous bureaucracy), never had skin biopsy , never seen ophthalmologist, huge eye dropping problem I could list more but it has to be said, its many times an nhs failure diagnosis ,I know it all comes down to cost, time and enough docs but it is the case all the same. Im sure id have had a diagnosis and help if seen privately by a specialist with an interest or at least fitting treatment.Theres a funding,specialist, postcode and class (financially) element to the MUS diagnosis, my visual symptoms have not been denied just ignored, the symptoms invisible therefore get no attention whatsoever.Bloods are done and when don't show what they should to fit you in a box then you're discharged with this diagnosis. bloods tested for Lupus, Lyme, Dermamyositis, scleroderma and on clinical visit, 'has anyone mentioned pmr to you', its like scleroderma inside not on skin', you have dermatographism,uticaria, raynauds,and it could be Myasthenia Gravis, Melkerson Rosenthal, wegeners, all on telephone appointments and photos sent. Then talking and photos privately with charity medical board and said you should be being tested for ??.
This to me is NOT mus its lack of testing and diagnosing. Initially diagnosed palindromic rheumatism and given hydroxy chloroquine, did wonders for my hands especially but new rheumy said no stopped drug and then things got worse symptom wise, breathing test told they would send report to rheumy who would give me drugs for, rheumy said no its probably asthma and that was that. Rheumy said no arthritis just lots of wear and tear,gp said thats arthritis. Hand swellings and dipping gp says 'strange'.
Am I upset, angry, frustrated, stressed yes indeed, do I need psychiatric therapy, no, I have had all the talking therapy I need on health unlocked with support and understanding, do I have MUS, no, I don't , I have no answers for all reasons mentioned, finance, bureaucracy, ignorance, disinterest, time, is my life hard, yes without diagnosis and trying to manage physical health not knowing why, but none of which FIT MUS diagnosis. Maybe anyone given this as diagnosis does not necessarily need psychiatric therapy (I feel I was not offered anyway as I have an obvious physical problem since the idiotic rheumy who diagnosed MUS and got her colleague to back her, he had a fibromyalgia print out on table, pushed me in different places, does this hurt, no ,this, no this no then one place swollen chest yes , its fibromyalgia. My mind is not the mind that needs the therapy but I think the said docs could use some, especially telling me to be grateful I don't have cancer.
I already had a diagnosis of fibromyalgia, the rheumy who diagnosed palindromic rheumatism said to me you can have more than one diagnosis you know. Palindromic or not, I now get no help or treatment and the treatment helped, does that not say something 🤷♀️.
In their exploration of MUS I hope they take into account, its not the psychiatric treatment that will help self manage, I have to do that anyway, its diagnosis and possible treatment as I did have but removed that helps you self manage but change MUS to PUS, presently undiagnosed , add due to no fault of their own but MF medical failure and that is NOT directed to the good docs that ARE out there, just unattainable to many.
This also does not suggest that physchological therapy is not good for those that want or need it, it can be helpful in the right place.
Yes, there is stress with or without diagnosis. But I have had both experiences and, at least for me, there is no comparison. Not being diagnosed is being in a hopeless and unsupported state.
I do hope, stiff, someone takes on your case and gets an answer for you. And not given in a letter like last time,
of course diagnosis brings it’s own stress.if you’ve read the post replies that Paul put up with a question on fibromyalgia and people’s experiences , I am not alone with the awful way I’ve been treated and much from this inappropriate labelling.
It is hopeless situation but a disgrace too , regarding mus , if you’ve not even been seen clinically or had testing and not just bloods, there are so many diseases or illness not just diagnosed on bloods , or seen by relevant specialists how can it be medically unexplained, it’s medically undiagnosed, and just because you have no diagnosis it does not make your symptoms disappear so why discharge you without follow ups. I have no history since discharge as the total mistrust and degrading responses from gp left me struggling alone and still, my only history and proof of symptoms is what I document myself., and of course there’s no one to look but no history on their records. No wonder things are medically unexplained, I was recently in agony with legs , huge rash on back of leg and horrid dips in legs which I get arms hands face and feet too , I bit the bullet and went to docs who looked and said mm strange. Wait for appointment. Neurology I been waiting since 2020, supposed to be happening in 2024 but been told by them to try and go private to get seen sooner and referral to Bristol hospital made in 2021 still not happened and I chase all the time. This is why you get labelled , mus is not correct labelling it’s mud medically undiagnosed and it’s sheer mud I’m drowning in and my heart breaks for anyone else in this position.
My face alone is ruined on the outside, my hands and feet, what’s going on inside scares the hell out of me how I feel and I’m dreading the longed for summer.
Thankyou Kay I hope so too , I’m soon to be in a position to be seen privately and it hasnt come soon enough now I need to find a rheumy with interest whom can be trusted and the nerve to go, hate is a strong word I never use as a rule but since this began I hate what’s become of me and hate their neglect . The docs who diagnose MUS should have to prove their diagnosis ie what tests and who seen and how they come to this , then we will see the inappropriateness of such .
You would have felt validated, Stiff, by a letter in an American newspaper written by a high level administrator at the NHS. He said it is not too late to save the NHS but you only have to be a patient to know how broken it is. He cited people exactly like you who were told by NHS doctors to go private because waits were frighteningly long. They could put you on a poster with the dates of your scattered appointments with no follow ups.
I agree that term medically unexplained has to be used very carefully. Doctors need a new way of explaining this « no where state » to patients. I know it wouldn’t be easy because you don’t want to scare patients by telling them everything you are considering but at a certain point there could be a plan for follow up, monitoring new symptoms, symptom control.
It is hard to believe we live in two of the wealthiest countries in the world and yet there are medically unexplained symptoms simply because patients can’t get doctors’ appointments. We have areas that no longer have maternity wards in their hospitals! 😢
Bless you and may that neurology and Bristol appointment date come soon.
Thankyou . Sad to feel like we are losing nhs but its not a surprise, its been heading this way for many years and our current government prove they have no love for it , they cant be seen to sell if off because of the people, so are killing it(along with selling off quietly with privatisation) . Honesty being the best policy in all walks of life is something they don't understand. Our countries respectively should hold their heads in shame given the wealth.
I don't feel I have anything rare as it fits much, I just think it would be rare locally for a doc to care ,I last see a rheumy in 2018, things change and did drastically after no Hydroxychloroquine and yet 🤷♀️.
I could write a book of the failings of the nhs but ultimately we need them, or did, in current state not serving us as should,I could probably write a book also on all the good they do or can do. There are people unfathomly who abuse the system and the nhs is guilty of wastage too so can it be fixed 🤷♀️I doubt it and probably not in my lifetime , if something breaks enough no amount of glue can put it back together.
Thank goodness for good specialists who battle through all this and I cant wait to meet one 👍
I can confirm that the wording of the post is taken from the participant information sheet sent by the researcher, and not wording from LUPUS UK.
I believe that all your comments give great insight into the subject matter and I am feeding the comments (anonymised) back to the researcher. If you would like to take part in the research or be put touch with the researcher to enable you to add your thoughts on the work they are doing, then please email me at alida@lupusuk.org.uk.
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