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

MAGENTA ?

 

Oh, I see that. I will write a letter and post it to them when I get around to it, noting that the LP process has an editor's note that essentially confirms it's an ethical and methodological disaster. I will address it to Fiona Godlee pointing out that this study she refuses to retract continues to be cited and therefore continues to possibly harm children. I will cc Bristol, NICE folks, MPs, etc.

 

Think there is generally an assumption that if a treatment is known to be effective in adults it is reasonable to use it on adolescents. Most treatments have no specific trials in young people. Which is why the Lightning Process trial was so peculiar.

I guess that the adolescent services are waiting to see the verdict on adult treatment and expecting that to be the yardstick for their guidelines. But the fact that Lightning is specifically mentioned may indicate that they are aware how little basis there may prove to be for other things.

 

We have direct experience of GOSH.

My daughter went there, with us(parents) in spring 2011

The team there under Anna Gregorowski (nurse specialist who did a PhD in ME and is sometimes referred to as Dr Gregorowski now) subsequently relocated to UCL. As a member of a couple of Parents Facebook Groups, I still regularly hear terrifying things from this group.

The approach is totally PS. The only bio bit was prescribing melatonin for sleep problems.

ETA: There was no appointment with a doctor nor physical examination nor blood tests at GOSH. (Also corrected year above)

 

Our initial appointment, to confirm that A had ME, was a discussion with Anna G and the three of us. I got to the room slightly after A and her dad had begun.

This is only significant because Anna had already asked them to decide where on a scale of 1-100, where A's current activity or wellness or similar was. Anna checked that I agreed with their suggestion of 70%. IE A could manage 70% of her normal life.
As she had been at school for about a day that term, and had stopped trampolining/ballet and most socialising I felt it should be nearer 30% of normal. However not wanting to worry A or completely disagree at this stage, I said that I thought it was nearer 50%.

I still don't know how they arrived at 70%.

Anyway this gives some idea of how accurate any "scores" based on this really are.

 

I had forgotten that the appointment began with questionnaires. I think we completed them at GOSH, some for A and some by us.

Then A was taken for a physio assessment, on her own. We did not realise that this included sit-to-stand, cycling and some other exercises which she was encouraged to do to her limit!

I remember on our way home that A could hardly drag one foot in front of another at St Pancras, which luckily is not a regular thing for her.

When they wanted to repeat these at her last visit I informed them that she would NOT be doing them. Despite this they scheduled a physio to do them and it just meant we had to wait for an extra hour!

 

At her initial assessment we were asked if 2 other people could sit in. One was doing research (prob PhD) on cortisol levels, which seemed reasonable.

The other one said at some point that she had been reading research on how deconditioned people became after weeks of bedrest. Having been confined to bed for 7+ weeks post extensive spinal surgery, age 18, I knew this was so, but had no idea why she was mentioning it then, so made no comment. I did not realise the relevance then!

We had agreed at the initial appt that A would be happy to join in the cortisol research. However at appt 2 it was apparent that to be in the project she needed to have 2 samples taken 8 weeks apart, before any "treatment" began. So we opted out as we all wanted A to improve asap.

As someone commented earlier in the thread, you believe that GOSH, as a centre of excellence worldwide, for child/adolescent health will provide the best/cutting edge approach to your child's illness.

I did know, at the time, that ME was often chronic and that there were no magic bullets. We were still hoping it was a post-viral condition that would clear up in time for her to return to school that Autumn and restart her A levels. We also believed the literature that prognosis was better for youngsters.

 

Where we are now is: things are actually worse than 20 years ago, clear regression, and there is no measurable difference between countries that still do nothing whatsoever and those that adopted the psychosocial model. Millions have been wasted on a status quo that is clearly disastrous and barbaric and medical care is actually causing harm and suffering.

Which obviously, in the delusional mind of fools, means that things are working great and should continue on their merry way despite running in circles with only the ruts in the ground from the previous circles as evidence that there is value in continuing to run around in circles.

But, sure, I guess that means the magical LP is the solution. Who cares? People are dying of a non-fatal disease and the costs add up to well above $100B/y worldwide, but let's have a few people here and there jump on mats and pretend they are "recovered", which means whatever the F you want.

Actual historical footage of the birth of the psychosocial model:

 

Same as always: lying and cheating. As is tradition.

 

And, of course, GOSH is the home of Pervasive Refusal Syndrome-though it is not clear whether the original cases described there by Lask were a genuine discrete category which was only extended elsewhere, further west, into severe ME.

 

The sessions, monthly for 6 months comprised a one to one "goal setting" session of A with a physio, followed by a family chat session for a second hr, with a clinical psychologist.

I think A was relatively happy with the physio sessions. They were talk, not exercise, based.

I was allowed in for the last 5 minutes, to discuss what A and physio had agreed between them.
To me, the suggestions ranged from pointless to completely unachievable.

For example, initially it was go out for maybe 20 mins each day. BUT A did not want to be out and about near our home or nearest towns in case she was "questioned" about how she was by people she knew. So, we would need to drive somewhere to do this and they seemed unclear as to whether the drive time should be included or not...

I think we came out of one session with a recommendation to drive half-way to Dorking and then back, which seemed pretty pointless!

A was so desperately keen to be better that she would agree to anything the "professionals" recommended.

A was asked to take her timetable in sometime in October, so they could devise a daily plan for her.
This time the physio came up with a plan of 2-3 hrs daily, from 11 or 12 for one or two lessons and/or lunchbreak.

Again A agreed because she would have loved to do that.

BUT it was completely impractical:

• If A came down by 11am, she dozed off again downstairs, so being at school by anything before 12 was not going to happen.
• It would be pointless to attend a few AS level Maths sessions a week as it is not the type of subjectyou can dip in and out of.
• Hardly any geography lessons were included. This was a subject that she had begun the previous year and we had notes for. It also included a couple of students she knew well (having gone down a year). She also knew all the geog teachers well.
• Most of the lessons seemed to be for Govt and Politics. She had chosen this instead of Art as the Art teacher had been such a COW (polite version), the previous year when she had been unable to attend regularly. She had also decided not to continue with Biology as the practicals were assessed over the year, so she would need to be in at certain times.
• She had only managed a couple of lessons in the previous month so this was NOT an achievable target.

 

The clinical psychologist chats were OK. Anna Hutchinson never gave the impression that A had anything other than a REAL illness. She was generally very supportive and we did find out that A was now feeling responsible for her younger brother helping/behaving when my back was bad. Older bro had gone off to Uni a year earlier.

Sadly she seems to have moved on to Kings so may well be far less reasonable now.

 

Why did we go for 6 months:

• For a medical letter explaining her illness and thus delay in education, for when she recovered and applied to Uni.
• Anna G actually rang and explained the reality and implications of the illness to a family member who did not "get it" at the time. This did help.
• We discovered a lovely Indian restaurant near St Pancras, that did a very tasty, special lunch deal, on the day of the appts.

 

One of GOSH/UCL recommendations is to limit all screen time to a max of 4 hrs/day.

Other than avoiding it for an hour or so before bed and not being glued 24/7, this seemed impractical and harsh, especially for teens who are unable to attend school or socialise for more than an occasional few hours.

I did ask for a reference to back up this advice on one of our visits, but they could not provide one and commented that it was more for the boys anyway because they played games nonstop.

This advice is still extant AFAIK and parents have been threatened with SS(Social Services) involvement by UCL, because they are not managing to reduce their teen's phone use.

 

Enough about us for now, but I will post more re current UCL approach another time.

 

Yes, but if I'm not mistaken, that one is still ongoing. And it compares GET with graded activity. I was referring to published papers the authors might have used to claim the efficacy of GET in adolescents with ME/CFS.

Had a quick look. I think there were some reports about rehabilitative treatments, but not something that comes close to an RCT testing the efficacy of GET in adolescents with ME/CFS. Fun fact: one of these papers is about a treatment called the "STAIRway to Health programme".

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1719984/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1720370/
https://www.ncbi.nlm.nih.gov/pubmed/19493121

There was actually one Australian RCT but it compared two graded exercise types against each other.
https://www.ncbi.nlm.nih.gov/pubmed/20605858

If others know of papers on GET in adolescents with ME/CFS, please add them to the list.

 

It is VERY INTERESTING that UCL/Gregorowski team is publishing NOW.

AFAIK Anna G has not done much "research", other than that relaing to her PhD, which I assume is covered by a paper in Arch Dis Child 2004.
https://adc.bmj.com/content/89/7/615

Basically it says that their "rehabilitative treatment" works wonders.

Maybe, now that Bristol/Crawley are under the spotlight, they want to diversify/show that amazing results can be achieved in different outpatient settings with the right approach.

 

As a parent you are forced to go to these clinics with your child because otherwise there is no-one to write to the school on your behalf, it does not mean that the children have actually done all of the things that the programme outlines.