UK: University College London hospitals (NHS)

Suffolkres

Suffolkres

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MSEsperanza said:
Somehow this seems to have made it into the Swiss journal Paediatrica.

Google translate of the article:

https://www-paediatrieschweiz-ch.tr...sl=auto&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=nui

About the journal:

https://www-paediatrieschweiz-ch.tr...sl=auto&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=nui
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Treatment and rehabilitation of adolescents and children with complex conditions service (TRACCS)
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Living with CFS/ME can be hard, but we are here to try and make it easier to get life back on track.

The service has been successfully treating Chronic Fatigue Syndrome (CFS) and Medically Unexplained Symptoms (MUS) for the past 16 years. We are part of a teaching hospital with state-of-the-art facilities and have a specialist team of doctors, nurses, physiotherapists, occupational therapists, psychologists, dieticians and social worker.

Our nationally recognised service helps children and young people (up to 19 years) who are living with CFS/ME, chronic pain, medically unexplained symptoms, non-epileptiform seizures and chronic headaches.
 
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Treatment and rehabilitation of adolescents and children with complex conditions service (TRACCS)
Living with CFS/ME can be hard, but we are here to try and make it easier to get life back on track.

The service has been successfully treating Chronic Fatigue Syndrome (CFS) and Medically Unexplained Symptoms (MUS) for the past 16 years. We are part of a teaching hospital with state-of-the-art facilities and have a specialist team of doctors, nurses, physiotherapists, occupational therapists, psychologists, dieticians and social worker.

Our nationally recognised service helps children and young people (up to 19 years) who are living with CFS/ME, chronic pain, medically unexplained symptoms, non-epileptiform seizures and chronic headaches.

  • We work collaboratively with young people and families and plan the programme together
  • We provide advice on reversing the vicious cycle that happens when fatigue, pain and inactivity reduces the ability to do things and time away from school affects schoolwork, friendships and mood
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https://www.uclh.nhs.uk/TRACCS

Patient leaflets:
An introduction to Chronic Fatigue Syndrome (ME CFS)

A number of things contribute to the development of symptoms
Symptoms may happen after acute trauma to an area of the body (such as). They can
also develop after an illness like anaemia or glandular fever.
Stress or stressful life events like a change in school or family circumstances, or anxiety
over examinations, can affect how your body deals with infections.
Fatigue and pain cause a spiral of decreasing physical activity and fitness. This leads to
deconditioning (the decline in physical function of the body as a result of physical inactivity),
fatigue and an increase in pain.
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A range of labels is used to describe the condition depending on the degree of fatigue
and type of pain.
●Chronic Fatigue Syndrome (CFS) or Myalgic Encephalitis (ME)
–
significant fatigue with or without pain
●Reflex sympathetic dystrophy (RSD)
–
pain in a limb with physical changes
●Chronic regional pain syndrome (CRPS)
– diffuse pain in a specific area of thebody
●Diffuse pain syndromes–chronic, generalised pain in joints, the spine and
muscles
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so no need for PEM?

We talk about how fatigue and pain affects a young person and their family. We invite
your local network (e.g. the referring team, school, and local support services), to
support a treatment programme designed in consultation with you guiding the pace and
direction. The programme can include the following:
●Help establishing a robust routine. This includes sleep and activity,
mealtimes and screen time.
● Activity advice and management to increase muscle strength, improve balance,
coordination and joint mobility.
● Graded exercise therapy (GET) to further develop strength and stamina, and
improve fitness.
●Pain management techniques including relaxation, activity scheduling and
pacing.
●Developing activities of daily living (e.g. ordering food in a cafe, m
eal planning,
shopping and cooking).
●Develop confidence in managing symptoms and getting back on track.
●CBT (cognitive behavioural therapy).
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https://www.uclh.nhs.uk/patients-an.../introduction-chronic-fatigue-syndrome-me-cfs


https://www.uclh.nhs.uk/patients-an.../introduction-chronic-fatigue-syndrome-me-cfs
 
16 years? Must have successfully treated tens of thousands of pwME in that time.

...and no one, not even the NHS, has heard of it, and adopted such a massively successful treatment nationwide? Not even when they were rolling out ME centers (which later closed coz..well.. they didn't cure squat)? Not even in the mad rush to treat LC? Not even with all the money that seems to be available to deal with LC worldwide?

When such a successful treatment modality could have been used to show NICE what wonderful, and effective, things CBT and GET are?

Coz.....there is considerable evidence against the dogma that CBT, GET and sleep hygiene are effective. So much evidence that they are no longer recommended treatments, in fact that GET is specifically recommended against.

Neither the NHS nor NICE accept that the approach is a valid one, that doesn't risk harm, let alone that it's so 'successful'.

My credulity is 'stretched'.

:grumpy::banghead::banghead::grumpy:
 
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Wonko said:
16 years? Must have successfully treated tens of thousands of pwME in that time.

...and no one, not even the NHS, has heard of it, and adopted such a massively successful treatment nationwide? Not even when they were rolling out ME centers (which later closed coz..well.. they didn't cure squat)? Not even in the mad rush to treat LC? Not even with all the money that seems to be available to deal with LC worldwide?

When such a successful treatment modality could have been used to show NICE what wonderful, and effective, things CBT and GET are?

Coz.....there is considerable evidence against the dogma that CBT, GET and sleep hygiene are effective. So much evidence that they are no longer recommended treatments, in fact that GET is specifically recommended against.

Neither the NHS nor NICE accept that the approach is a valid one, that doesn't risk harm, let alone that it's so 'successful'.

My credulity is 'stretched'.

:grumpy::banghead::banghead::grumpy:
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Homeopaths have treated millions of patients. This statement is exactly as true as the above.

Unfortunately, in medical language, treating something doesn't actually mean it did anything, it's clear that someone doing something, however useless, meets all the definition and nothing more is needed. At least when convenient, of course it's mostly arbitrary.

Predictably, the McDonaldisation of medicine has lead to an alignment of slogans: millions served. Served pseudoscience, served nonetheless.
 
One of the consultants: Dr Joanna Begent - among her specialties:
  • Named Doctor for Child Safeguarding
  • Specialist Child Safeguarding clinic for complex cases

After studying medicine at Oxford University and St Mary's Hospital Medical School, Joanna spent her paediatric training in St Mary's, Great Ormond Street, the Whittington, the Royal London and University College Hospitals. Her specialist training was in paediatric oncology and she did several years of research looking at PET-CT scanning in paediatric cancers. Her work included collaborations to establish national and international guidelines for PET-CT in children.

After six months as a consultant at Great Ormond Street, Joanna returned to general paediatrics at UCLH, developing her interests in child safeguarding. She runs a general adolescent medicine service with a large multidisciplinary team, looking after young people with varied and complex illnesses. She is a member of the Parents and Carers Advisory group at the Royal College of Paediatrics and Child Health and a Governor of the Great Ormond Street and University College Hospial School.
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Families turning up for help with 'complex conditions' and being met with a specialist in child safeguarding. What's the chance the mother gets blamed?

This thread makes me want to swear.
 
The other consultant: Dr Terry Segal
She trained in Bristol University, and after returning to London, she undertook postgraduate paediatric, adolescent and endocrinology training at Whittington, Guy's, Great Ormond Street, Barnet, and UCH/Middlesex hospitals.
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I assume Crawley has had a hand in the creation of Segal's beliefs. Segal is part of the Clock consortium.

She is particularly interested in working with overweight and underweight children and young people, adolescent problems such as chronic fatigue syndrome/ME, and those with chronic pain and emotional difficulties.
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CFS/ME is an 'adolescent problem'?

Research interests include:
  • Chronic fatigue syndrome
  • Obesity
  • Anorexia nervosa (medical aspects)
  • Chronic medically unexplained symptoms
Looks like this paper, authored by Segal was influential in her thinking - could be worth a look.
Segal TY, Viner RM, Hindmarsh PC. Disturbed adrenal function in adolescents with chronic fatigue syndrome. J Pediatr Endocrinol Metab. 2005 Mar;18(3):295-301.and Arch Dis Child 2003; 88(SupplI): A8.)

There is discussion of this service and of Dr Terry Segal on this thread:
ME/CFS services in the United Kingdom
 
Fatigue and pain cause a spiral of decreasing physical activity and fitness. This leads to deconditioning (the decline in physical function of the body as a result of physical inactivity), fatigue and an increase in pain....

The programme can include the following:
●Help establishing a robust routine. This includes sleep and activity, mealtimes and screen time.
● Activity advice and management to increase muscle strength, improve balance, coordination and joint mobility.
● Graded exercise therapy (GET) to further develop strength and stamina, and improve fitness.
●Pain management techniques including relaxation, activity scheduling and pacing.
●Developing activities of daily living (e.g. ordering food in a cafe, meal planning, shopping and cooking).
●Develop confidence in managing symptoms and getting back on track.
●CBT (cognitive behavioural therapy).
Click to expand...
How, post-NICE (and everything else), is this not at best reckless indifference, and at worst cruel fraud?

These people clearly care not one wit for the welfare of their patients. Only for the survival of their egos, empires, and incomes.
 
The clinic is in effect run by Anna Gregorowski, clinical nurse consultant, with a PhD in: Yes you guessed it - treating Adolescents with CFS and is currently Chair of BACME!

Yes, the same BACME who said they are happy to support/work with (?wording) the 2021 NICE GDL.
CS has arranged a meeting with her and at least one other BACME exec member.
 
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I have a referral to " Chronic Fatigue Syndrome & Fibromyalgia Service (RAS) - RLHIM - UCLH - RRV ", which came after initially being referred to the Royal Free Fatigue Clinic. This is the UCLH service website - https://www.uclh.nhs.uk/our-service...nic-fatigue-syndrome-and-fibromyalgia-service

Doesn't look super promising, it says something about the psychological dimension of the illness, but then when it talks about CBT it just says that the CBT is to help with coping, rather than to treat the illness.
The letter says that if I haven't heard from them by next Thurs 15th I should call them.
I couldn't find a thread about this specific service - it seems like it's a different service to the TRACCS. Anyone got any intel?

I'm mainly just looking for a diagnosis at this point, so I can take part in DecomeME and I suppose in case a proper thorough differential diagnosis ruled out / in some things that haven't yet been investigated.
 
josepdelafuente said:
I have a referral to " Chronic Fatigue Syndrome & Fibromyalgia Service (RAS) - RLHIM - UCLH - RRV ", which came after initially being referred to the Royal Free Fatigue Clinic. This is the UCLH service website - https://www.uclh.nhs.uk/our-service...nic-fatigue-syndrome-and-fibromyalgia-service

Doesn't look super promising, it says something about the psychological dimension of the illness, but then when it talks about CBT it just says that the CBT is to help with coping, rather than to treat the illness.
The letter says that if I haven't heard from them by next Thurs 15th I should call them.
I couldn't find a thread about this specific service - it seems like it's a different service to the TRACCS. Anyone got any intel?

I'm mainly just looking for a diagnosis at this point, so I can take part in DecomeME and I suppose in case a proper thorough differential diagnosis ruled out / in some things that haven't yet been investigated.
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I have heard only really bad things about this service, my impression is UCLH is one of the worst places in the country to go if you have ME. Also, steer clear of their PoTS / autonomic unit service if they refer you there : you will almost certainly come out with a “deconditioning” diagnosis, probably told that you don’t have an organic illness, and that there will be no medication to help.

I know you only want a diagnosis, so you may be able to get away with just getting a diagnosis & then asking to discharge yourself, if you’re not happy with their service.

UCLH can be really great for other diseases and conditions, but not ME.
 
Ariel said:
How does this relate to the long covid services UCH was/is running? :(
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Yea that's a good question - I actually had some appointments at that UCLH / RLHIM Long Covid service around this time last year, I think they did diagnose Long Covid for me (I had ME before covid, but it got worse after having covid), but they were also quite "meh".. Not sure if it's any of the same doctors / how much overlap there is..
I had one appointment with a neurologist - Dr Patricia McNamara, and was offered an appointment with a Dr Christian Hasford, but by then I had decided to leave the UK and stop working for a while to see if that would improve things at all.

I can see that Dr Terry Segal seems to work at the UCLH Long Covid service - https://www.uclh.nhs.uk/our-services/find-service/covid19-clinics/post-covid-followupservice
 
lunarainbows said:
I have heard only really bad things about this service, my impression is UCLH is one of the worst places in the country to go if you have ME. Also, steer clear of their PoTS / autonomic unit service if they refer you there : you will almost certainly come out with a “deconditioning” diagnosis, probably told that you don’t have an organic illness, and that there will be no medication to help.

I know you only want a diagnosis, so you may be able to get away with just getting a diagnosis & then asking to discharge yourself, if you’re not happy with their service.

UCLH can be really great for other diseases and conditions, but not ME.
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Sid said:
Can confirm. I saw one of those UCL neurologists for POTS and the prescribed treatment was go to the gym. I was almost 100% bed bound at the time.
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I second all the above.

As @lunarainbows said, you could get the ME diagnosis and discharge, but if you do one day want to explore proper neuro help at UCLH, you can't have a ME diagnosis.
 
josepdelafuente said:
Oh, could you elaborate on that?
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There seems to be a common theme within the neuro department at the hospital that patients diagnosed with ME/CFS have a non-organic (conversion) disorder; therefore, patient complaints do not need to be investigated as such. However, neuro symptoms are neuro symptoms, and if you see a neurologist specialising in conditions that cause your symptoms first, it would be negligent for the consultant not to investigate. The ME/CFS diagnosis can be used as a 'reasonable excuse' not to test or treat the patient.



[Edited for clarity.]
 
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For some reason, the UCLH fatigue service may also reference Simon Wessley on the ME/CFS diagnosis letter they provide. Stating symptoms appear to be the same as depression. So that could go on your medical records for insurers/legal/employment to see.
 
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livinglighter said:
There seems to be a common theme within the neuro department at the hospital that patients diagnosed with ME/CFS have a non-organic (conversion) disorder; therefore, patient complaints do not need to be investigated as such. However, neuro symptoms are neuro symptoms, and if you see a neurologist specialising in conditions that cause your symptoms first, it would be negligent for the consultant not to investigate. The ME/CFS diagnosis can be used as a 'reasonable excuse' not to test or treat the patient.
[Edited for clarity.]
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Interesting, thanks. I think I know what (some of) the answer would be, but - conditions such as?
 
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