United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

https://twitter.com/user/status/1472186921686388740

 

*Ahem*

50+ years of wasted opportunity to do research. Throwing $20 to a multi-million dollar problem does not count as a serious effort. Throws pocket change into the wind "I solved poverty!" Nope, you did not. Get out of here with that nonsense.

If only we had had half a century of research. We literally wouldn't be in this mess. But it didn't happen, let's not pretend, let's stop the constant stream of lies that ruined everything, including the fact that serious efforts to research this issue were explicitly blocked, even maligned, with the explicit intent of erasing it from existence, replaced with 19th century fairytales.

The BPS treadmill of nonsense does not count, in fact it literally counts against. So we would take whatever amount was allocated to actual research and have to deduct all that was spent on denial-based non-research. The same way we do not count HIV denying research as AIDS research. It explicitly counts against, and we would need to add to that the constant marketing of denial-based models, which had the direct intent of supressing all those efforts.

It's good that Hammond is accepting that things are not as depicted. But the lies have to stop, and it's precisely because we did not have research in those decades that everything is broken, with a delusional ideology having taken its place, revealed to be a paper tiger now that it had to be left out of its cage and faceplant spectacularly before being tossed about by weak wind.

 

https://twitter.com/user/status/1472126333341810688

 

Is that a spoof? he is gonna get some seriously gross photos if he not careful!

in addition.... I would love to 'enjoy' my wild & precious life, you patronising ***!

but all i can do is endure it, and your BPS cronies are a big part of the reason why.

 

The phrase 'your one one wild and precious life' is actually a quote from Mary Oliver's poem The Summer Day which is really says the opposite of the Gradgrind (Charles Dickens) approach which only gives people value as productive units.

Although the BPS lot would probably want to call it mindfulness and ensure the distance strolled in the fields was regularly increased by 10% (and lying in the grass watching insects would be frowned on- avoid resting in the day) all to be recorded in an activity schedule with questionnaires to complete after.

https://www.loc.gov/programs/poetry...all-poems/item/poetry-180-133/the-summer-day/

 

Transcript of, I assume, this interview.

https://meassociation.org.uk/2021/1...-phil-hammond-covering-long-covid-and-me-cfs/

 

Post copied from the general thread about UK clinics

This 2022 post-NICE document is a horror. It's long, pays lipservice only to NICE 2021. The 'T' Word (Tiredness) is in there of course. I think that inserting the Tiredness word in as many documents as possible is now BPS policy. The treatment is CBT/GET at core, with heavy emphasis on 'thoughts and beliefs', and on increasing exercise/activity, surrounded by a huge amount of disguising waffle. The Document is very long. I can only highlight some of the very, very many problems with it, so will quote odd lines/paragraphs.



'CBT for Chronic Fatigue: Therapist Manual'

Version 4
05.01.2022

'PAEDIATRIC ME/CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK ... for supporting people with Chronic Fatigue Syndrome/ME (ME/CFS). The primary.'

Starbuck, J., Loades, M.E., & Chapple, K. | 2022

https://www.ruh.nhs.uk/patients/ser...rofessionals/CBT_for_CFS_Therapist_Manual.pdf



Page 4:
'The updated NICE guidelines (2021) recommend that Psychological therapy be available for supporting people with Chronic Fatigue Syndrome/ME (ME/CFS). The primary therapy that has been used and researched is Cognitive Behaviour Therapy (CBT)'

That gives the impression that NICE still recommends CBT. NICE does not, NICE says CBT should be available if wanted.



Page 8:
'Re-building self-confidence and enjoyment of activities
As a young person progresses through treatment it is possible to shift focus not just to the rebuilding of activities themselves but also to the enjoyment of them. CBT for ME/CFS can give the young person opportunities to explore why activities are important to them, and to reflect on themes such as their sense of self and identity. As a young person returns to old favoured activities (or indeed begins new ones) it is important to scaffold the rebuilding of their self-confidence; something which is likely to have taken several knocks during the course of their illness.'



Page 10:
'What is ME/CFS?: Psychoeducation about ME/CFS
Definitions and diagnosis
Chronic Fatigue Syndrome (CFS), sometimes referred to as Myalgic Encephal0myelitis (ME), is a health condition characterized by extreme tiredness.....

'To be diagnosed with ME/CFS a young person would need to meet the following four key criteria:
• Persistent fatigue, that is not life-long but has been ongoing for at least 3 months.
• The fatigue is not just due to exertion (instead, it is there in the background a lot of the time) and is not substantially improved by resting.
• Post-exertional malaise; the fatigue is worsened after increased activity. This can show itself 1-2 days after the busy time and can take a few days to recover from.
• Fatigue that is severe enough to significantly disrupt all areas of daily life e.g. going to school, hobbies or clubs, time with friends or family, etc.


Page 11
Onset and maintenance of ME/CFS
'The evidence points towards behavioural maintenance factors (activity patterns, sleep) and cognitive maintenance factors (thoughts and beliefs about fatigue). And this is where we can helpfully apply evidence-based treatments, including CBT, to enable the young person to make changes and work towards recovery from their fatigue.'


Page 11:
Recovery in ME/CFS
' ..... However the good news is that recovery rates from ME/CFS in young people are good. A Dutch study looking at recovery found that approximately 85% of young people were recovered (absence of severe fatigue) at 1 year after starting active ME/CFS treatment (internet based CBT for fatigue).
This data can be compared to a 27% recovery rate for those who were not in active treatment, after 1 year
(see Nijhof, S. L., Bleijenberg, G., Uiterwaal, C. S., Kimpen, J. L., & van de Putte, E. M. (2012).

Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial. The Lancet, 379(9824), 1412-1418).

This data shows us a few things:
1. The recovery journey takes a matter of months, or a year, or perhaps longer. It is not something completed in weeks.
2. It suggests that many young people with ME/CFS will be recovered after 1 year of CBT.


So Bath fatigue Clinic IS stating that CBT is treatment for ME/CFS and that children can recover by doing CBT via the clinic.



Page 17
'it is hugely important to help the young person recognize the links between their own thoughts, feelings, behaviour, and symptoms of fatigue'


Page 23
'Increasing the activity baseline
When a young person has managed to sustain the baseline level of activity consistently for 2 weeks, they can then be instructed to increase this by 10-20% every week or two if appropriate. Therefore, using the above example, a baseline of 4 hours’ ‘red’ activity would then increase to something in the region of 4 ½ - 5 hours. The aim is to continue gradually increasing the baseline activity level in this step-wise fashion if appropriate until the young person can comfortably manage at least 8 hours’ high energy activity per day. At this point the young person will be working towards fulltime school attendance again and will have enough in their allowance to begin reinstating other activities outside of school.



Page 28
COGNITIVE WORK: THOUGHTS THAT ARE UNHELPFUL
'...... Common unhelpful themes in the thoughts of a young person with ME/CFS may include:

• A focus on symptoms or even looking out for them when they are not present
• Negative interpretation of symptoms, either predicting worsened fatigue and/or ‘blaming’ activity for the presence of symptoms'

 

Phil Hammond retired from the NHS at the beginning of 2022: In Conversation Live with Dr Phil Hammond https://www.rsm.ac.uk/events/philanthropy/2021-22/phq13/

"Dr Hammond qualified as a Doctor in 1987 and worked in the NHS for 37 years. As a doctor, he worked part time in general practice for over 20 years and has also worked in sexual health. His most recent post was in a specialist NHS paediatric fatigue team based at the Royal United Hospital in Bath up to his recent retirement on 1 January 2022. He has just trained and volunteered to aid in the COVID-19 vaccination effort and is yet to be called up."

 

Media Release
RUH to hold its AGM for 2022
The AGM is open to everyone and takes place on Monday 19 September from 5pm at the
Apex City of Bath Hotel, James Street West, Bath.

pdf
https://www.ruh.nhs.uk/media/documents/2022_09_05_AGM_2022.pdf

 

Bath Centre for Fatigue Services
"About us
We are a national service providing outpatient based specialist services for adults experiencing long-standing fatigue linked to a variety of illnesses. People referred to our service might have Chronic Fatigue linked to a neurological or other long standing condition, such as joint hypermobility syndrome, Myalgic Encephalomyelopathy/Chronic Fatigue Syndrome (ME/CFS) or Cancer Related Fatigue (CRF).

For cancer patients please take a look at our referrals page for eligibility criteria.

The ethos of our service is based on supported self management. This approach enables people to better manage their conditions and regain some control over day to day activities and routines.

Services are provided in a variety of locations in Bath and Wiltshire and via a variety of media including SKYPE where appropriate.

What we offer
Specialist assessment and treatments taliored to your needs. These are based on best practice principles and are delivered by a team of highly skilled health professionals. Interventions are available to support you with everyday activity management including work related needs. We are also able to advise and signpost you to more appropriate services if necessary."

there's a linked .pdf re Patient Feedback (2018-19) https://ruh.nhs.uk/RNHRD/patients/services/fatigue_services/documents/Patient_feedback_2018-2019.pdf


Re: that AGM notice - it refers to "The hospital provides healthcare to the population served by four Clinical Commissioning Groups: Bath & North East Somerset CCG, Wiltshire CCG, Somerset CCG and South Gloucestershire CCG" - CCGs were abolished in July this year - not sure if that release is to be relied upon as a source of info !

 

Specialist Treatment for Children & Young People with Fatigue

Information Leaflets

Energy management

"When can I increase my
activity levels?
When you have managed 2
weeks of the same activity daily,
you can start to increase by 10%
a week. We will review this with
you in your appointments."

the leaflet was created in 2018 and linked to on their website
https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/leaflets.asp?menu_id=1

 

Bad. So bad.

 

No understanding of PEM.
Little / no understanding of common comorbidities
Lumpers not splitters .
A dangerous place .

From memory when Phil Hammond announced his retirement on twitter he received many tweets from former patients saying what a lovely doctor he was , but the treatment made them worse- there didn't seem to be much follow through doctor wise once therapists got going.

He seemed surprised .
Perhaps that was his eureka moment .

 

Agree with your comment. It is so deceitful or incapable of reading and understanding. Whichever of those two is their issue, given the amount of time and clarity in the Nice 2021 guideline that they do not recommend anything that is of the paradigm that ME/CFS is perpetuated by deconditioning or is 'cured' or 'treated' by treatment of false beliefs, in a world where all was right it either should have been enough to get the authors struck off as I can't see how you can claim professional and do this?

I also don't get where, given the change in guideline, they believe they have consent or permission or any right to claim that their psychological gaslighting of children with their off-the-books psychological programming is not of the harmful type.

Psychological belief-changing is historically something far from benign and should be treated as potentially more harmful than many drugs given how enduring it can be in trauma and changes - as we know from past psychological experiments from history. I just cannot understand why this isn't underlined and heeded given how famous such history is, and these made up as they go along things are happenning? particularly when it is children.

 

I don't think EstherCrawley was ever biopsychosocial believer in the way that this group want to tells they are. She followed what seemed a productive research avenue just as she did for interleukin-6.