Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now?, 2019, Segal et al

I know a mum who has an appointment on Tuesday. They say will then discharge her daughter if she does not follow their GET/CBT program,
The daughter has found GET pointless previously and resents the 10 min diary-keeping aspect.

If sh eis discharged ,who will write letters for EHCPs for 16-19 education?

 

Funny coincidence, I remember a quack (homeopath) saying more or less the same thing - and I agreed. (I was 17 at the time)

Of course I was doing almost nothing at the time and still had brain fog, constant headache etc. ¯\_(ツ)_/¯

 

Yes that is a good point. Also deflects scrutiny from Bristol - breathing space before MAGENTA reports/ publishes.

There also has to be a published evidence base for NICE - cue recent flurry of child and adolescent papers , sadly not really worth much given money spent.

 

Many members of Fiightback have had reports of over ups and false accusations in ME EDS and Mast cell. With children needing tube feeding the reality of their care is appalling. There is another program on 5 Live going out 5th May at 11am https://www.bbc.co.uk/news/health-48151355

 

https://twitter.com/user/status/1125008503360425985

 

Is it possible doctors deny the patient's reality because they cannot emotionally handle how awful and devastating chronic illness is?

 

Our Experience:
My daughter X was referred to GOSH in 2013 after local paediatric CFS unit closed in 2011. She already had diagnosis. 1st appt at GOSH was with Anna, psych and physio. They proposed family sessions and GET. X's father and sister also suffer from ME so the Family Sessions were just me on all but one occasion. Evidently angled at getting us to push X to meet her "goals", and to ensure that we didn't enjoy her illness too much!! These goals were to become the focus of appointments and continue when the GOSH unit merged with UCLH and we went there from 2016.
These goals focused on increasing walking by 1 minute (20%) every 2 weeks, meeting friends, increasing school attendance and bringing forward waking up time by 15 mins per week. She was prescribed melatonin and then amitriptyline. Truthfully the change in waking up times and improvement in sleep helped hugely.
Each session began with psych questionnaires, which always showed X was not depressed and had borderline anxiety, yet they suggested she see CAMHS locally (she didn't).
Over years every time X increased walking beyond around 12 mins a day she would relapse. For a period in 2014-15 X relapsed significantly and was unable to travel to London. Anna gave phone consultations still on same pattern of goal setting. Anna did not see this pattern of pushing X to the limit contributing to relapses. By this time X needed help with personal care and Medical Access team provided 1.5 hours per week home tuition as she could no longer attend school at all, i. e. she was worse than she had ever been.
We asked for support to get online tuition, this was not forthcoming as the mantra was to increase school attendance and socialise, and help for an EHCP application was only given when none of the local colleges would enrol my daughter.
Late in 2015 X was able to travel to London for clinic review. X nausea getting worse, Anna suggested having Complan when she couldn't face food.
At this time the GP referred E to local physio because trips to London were causing PEM lasting weeks. (The door to door journey is about 1.5 hours). The local physio, not an ME/CFS specialist, provided advice on aids to help with writing, and gentle hand exercises. She recognised that what GOSH /UCLH were suggesting did not make sense for the person in front of her.
In 2017 at UCLH there was a shift. X's nausea and weight became their focus. She had lost 2kg over 6 months and already was petite. Anna immediately mentioned eating disorders and suggest X drink smoothies instead of water to increase her weight. I question the logic of this advice. X already ate healthily, little and often and adding in high sugar drinks doesn't make sense to me.
Anna said she wanted to see X more frequently to monitor her weight, and in the meantime that X should reduce her walking until she had put weight on. I wasn't happy to go to London more often due to the PEM so agreed we would see GP to monitor weight. The GP saw that's weight was stable over 2-3 months and felt that was X's natural range.

Why did we keep going?
Well, we thought they were experts. It is only when you step away and look back that you see the patterns emerging of setting goals that took no account of the child's limits and contributed to relapses. We started to play the game - go along, agree goals then ignore them.
We also needed "experts" to provide letters for schools, exam boards etc.

We were fortunate not to be pressured into inpatient stays, and their regular programs which involved attending weekly were deemed too much travel. As soon as she was 18 X transferred to adult services.

X is still moderately affected. She uses a wheelchair /scooter, has help to wash and dress, and with all domestic tasks, wears sunglasses most of the time but manages to live independently (carers every morning and meals prepared for her). Accepting her condition and working with it in this way has given her a much better quality of life than aiming for ridiculous goals.

She takes COQ10, acyclovir, BHB, amitriptyline and Luteolin and has found them to be very helpful.

 

Thank you for sharing your and X's story @Yayab. This treatment of ME patients is SO insane and infuriating. What is the matter with these people?!? They know absolutely nothing about ME. Not because they can't, but because they are so wedded to the "treatment plan" they have cooked up that they keep themselves in willful ignorance of the reality of ME, or, with blinkers on, simply ignore it. There is absolutely no excuse for this. They have SO MUCH to answer for. If I lived in the UK and were well enough, I would like to organize a huge demonstration outside their facilities with other ME patients and their supporters highlighting their harmful practices and calling for change. For now, this has to remain a dream of mine as I hope and pray for their downfall. As ME biomedical science advances, that day is coming ever closer. It can't come soon enough, however. In the meantime, my heart aches for all those caught in their web of ignorance and hubris.

 

GOSH closed their CFS clinic who were trained by Porf Crawley.
They moved with all the same Dr/consultants I believe to UCLH
They seem to follow the BACME severe journal of 2018 that states even when a patient is severe they should be moved or have physio and at the moment children in a very severe state are fighting FII accusations while the physio insist on physiotherapy even thought he children are declining.

They do not believe in mast cell so with tube feeding they are giving the wrong feeds the list of this is endless and Dr Glaiser works with GOSH on the NICE
safeguarding guidelines and has outstanding freedom of information requests.

 

Phrenology was groundbreaking Nobel-worthy science compared to this nonsense. What will happen to all of those misled workers once they understand it was an elaborate fiction all along and they actually did nothing but harm sick people while insulting and tormenting them?

The bigger the mistake, the harder it is to accept it. This is one leviathan of a mistake.

 

Thank you @Tilly.

 

Has anyone yet accessed the full paper that started this thread?

 

Yes, it is now available through a College subscription.
I am most of the way through. The description of the illness, epidemiology, clinical features etc all seems quite reasonable if a little uncritical in one or two places. Lack of good evidence for common claims is frequently noted.

The management section on the other hand is very line-toeing with:

NICE [11] recommends graded exercise therapy (GET) and cognitive behavioural therapy (CBT) as effective treatments for CFS/ME, and this remains the current guidance for healthcare professionals in the United Kingdom. Together these approaches combine a graded increase in physical activity, social activities and school attendance with a reha- bilitative approach that addresses thoughts and beliefs about illness, which may impair recovery [3&,45,46].

Current recommendations are based on a num- ber of studies including the PACE trial (Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation) from 2011 [45]. PACE looked at adults with CFS/ME, and compared the effects of specialist medical care (SMC) provided alone and alongside adaptive pacing therapy (APT), CBT or GET in a randomized controlled trial. PACE demonstrated that CBT and GET were more effective outpatient treatments for CFS/ME when added to SMC, compared with APT added to SMC or SMC alone. GET is also supported by the GETSET study [47&], a self-help graded exercise trial for adults, which reported that guided self-help inter- vention, when added to SMC, is a moderately effec- tive intervention for fatigue, but had less effect on physical functioning for those with CFS waiting for clinic therapy.

The evidence base in CYP (children and young people) is more limited. To date, no replication of a trial similar to PACE has been conducted to explore the effectiveness of GET, CBT and APT with or without SMC in treating CYP with CFS/ME. Five systematic randomizedcontrolled trials in CYP demonstrate benefit from CBT treatment [3 (Crawley review)] but there is little evidence for GET when treating CYP [48].

There exists very little research regarding effec- tive treatment for severely affected CYP and a need for further research in this area remains. A recent publication of a small-scale study looking at a home based, family focused rehabilitative approach for severely affected housebound adolescents with CFS/ME [49] demonstrated improved physical func- tioning and social adjustment after treatment but no substantial improvements in fatigue in all participants.

An area being explored is the use of online CBT with teenagers. As many affected young people cannot travel long distances and have no local specialist service, a large online CBT trial for ado- lescents (FITNET-NHS) is in progress in the United Kingdom [50&]. If online CBT is found to be accept- able, effective and affordable, FITNET-NHS may provide an answer for many affected young people with little or no access to treatment. The effective- ness of CBT may be explained by findings which show that unhelpful cognitive and behavioural responses to symptoms appear to be particularly prominent in adolescents with CFS [51].

In addition, the Lightning Process, originating from osteopathy combined with self-coaching and neurolinguistic programming, has been shown to be effective when provided in addition to SMC for mild to moderately affected adolescents with CFS/ME [52&]. Another small-scale study examines how young people with CFS/ME use the internet to cope with illness [53]. This study reported that partici- pants initially used official sites at the start of their illness for fact-finding, then used patient and peer- led sites more frequently and for a longer period of time with a positive effect on coping. This is an area for future development and research as the use of the internet plays an integral part in the daily lives of adolescents today.

 

Then the discussion of treatment concludes rather limply with:

Whilst there is some debate about treatment approaches, a pragmatic and individualised approach to the management of CFS/ME remains key. Debate appears to stem from a concern that advocating psychological therapy implies accep- tance of a psychological origin to the illness. The stigma of mental illness and the struggle of many families caring for individuals with CFS/ME have also not helped. The hope in our minds is of a future in which we can think of all these approaches as tools in our armoury against this debilitating illness. Alongside pharmacological treatments, which at present are mostly evidenced for comorbidities, these should allow for a management approach which is both acceptable and effective but also specifically designed to meet the unique needs of each young person.

 

The conclusion is:


Treatment should be tailored to the individual, be multidisciplinary and involve education, treatment of comorbidities and support for family.


That seems fair enough except I am unclear what multidisciplinary has to offer. It is a bit like saying amen at the end of everything. I am also not quite clear what tailoring to the individual implies. It might mean taking sensible note of individual requirements and likes. It might mean deciding who needs to have their childhood trauma explored and who not.

 

"We started to play the game - go along, agree goals then ignore them.
We also needed "experts" to provide letters for schools, exam boards etc.

We were fortunate not to be pressured into inpatient stays, and their regular programs which involved attending weekly were deemed too much travel."

I could have written that; we all could have written that, through out the 1990's and into the new Millenium....in Suffolk.......

WHY should we still have to be playing these games in 2019? WHY?

It's a human rights issue surely?

This is where NICE should come in but sadly, I have little confidence it will deliver and that patient reps and that those on 'our' side will prevail and win through....
I would love to be proven wrong......

 

I agree that there are ethical and human rights issues here. I intend to raise this with the NICE guideline committee when I give testimony - which will be in September.

 

This whole British thing is upside down. How can you have effective treatments/rehabilitation if you don't even know what it is you're treating/rehabilitating? Just because a few psychs made up this idea about "false illness beliefs/cognitions" doesn't mean it's true. Every ME patient knows, to the depths of their being, it is NOT true. But who listens to patients? That idea, however, has become a meme that has saturated the mentality of the UK along with some other countries. What horrific harm that has caused, and continues to cause to patients and their families. These healthcare professionals are really the ones with the "wrong illness beliefs." If this meme remains the basis of UK thinking, what hope is there?

 

It's just a modest proposal. Except not satire, I guess they didn't catch that part. Or maybe they just read it wrong.