Radio on ME/CFS Sat 5th Nov 9-10amGMT

[Grigor]

So you guys think they didn't raise their activity levels ?

My GET was like that. Initially it was lowered and build up afterwards till a huge crash

 

[Tom Kindlon]

Thanks.
Non-members can't see it so I've uploaded it here: https://www.mediafire.com/?yk1zt79v93tu9ek

Over 600 people have downloaded this in the last 16 hours!
Well done @sue la-la

 

[Wildcat]

.
The therapists now talk about staying within a level thats not to much for you, but its still graded exercise or activity, with the objective to increase. Pacing does not have an objective of more activity, and is not therapist directed,
.

 

[TiredSam]

Uninformed listeners (i.e. everyone but us here on PR) listening to this broadcast will have no doubt been impressed by someone rattling off 'facts' at 100 miles an hour.

This is called a Gish Gallop. Tips on how to recognise and deal with one here:

http://rationalwiki.org/wiki/Gish_Gallop

 

[Sidereal]

So you guys think they didn't raise their activity levels ?

My GET was like that. Initially it was lowered and build up afterwards till a huge crash

Some surely do raise their activity levels as evidenced by the numerous anecdotes of crashes/harm but overall, as a group, there is no evidence from randomised trials that patients actually raised their activity levels.

 

[snowathlete]

My GET experience was that I was just told to start off small doing some actual exercise (on an exercise bike) then increase over time. Unfortunately, the first session (very mild) was enough to put me in bed and permanently disable me. There was no opportunity to limit other activity to compensate, or to increase exercise beyond baseline. So whatever they are selling it is dangerous.

 

[slysaint]

they get diagnosed with Pervasive Refusal Syndrome for not following the program

How to tell the difference
https://www.researchgate.net/public...ome_avoiding_the_pitfall_of_a_wrong_diagnosis
featuring EC

 

[TiredSam]

How to tell the difference
https://www.researchgate.net/public...ome_avoiding_the_pitfall_of_a_wrong_diagnosis
featuring EC

I've ranted enough this weekend, my keyboard can't take any more hammering, so I'm not even going to start on this article, except to say that EC is thoroughly sick.

 

[TiredSam]

It appears I have one more rant left in me. It's too easy and I can't resist:

G160(P) Case series of Pervasive Refusal Syndrome presenting with Chronic Fatigue Syndrome: avoiding the pitfall of a wrong diagnosis

At first sight the title suggests it might be something hopeful parents would find useful to avoid EC getting her clutches into their children, but no, it’s by her, presuming to advise her colleagues.

Abstract

It certainly is.

We investigated differences in presentation between children diagnosed with PRS and those with Chronic Fatigue Syndrome (CFS/ME) in a large paediatric CFS/ME service.

Shouldn’t you investigate differences before you diagnose them? So EC diagnoses these poor kids with PRS on a whim, then investigates her own arbitrary diagnoses as a source of more reliable diagnostic guidelines in the future. Obviously she’s been taking lessons in circular reasoning from her mate Parker the Circle-Drawer.

Results Seven patients (4 females) received a diagnosis of PRS (mean age 13.5 years).

Sickening that she chooses teenage girls as her victims, but then bullies always go for the easiest victims. I’d like to see her diagnose me with PRS.

Routinely collected assessment data was available for 6/7 patients (Table 1).

Huge sample size then. Wasn’t she just criticizing small, unreplicated studies in another context? No matter.

Patients with PRS were similar to those with CFS/ME in terms of age, gender, presence of anxiety or depressive symptoms, time to assessment and pain. They were more disabled than CFS patients (mean SF-36 physical function 0 compared to 50, P = 0.02) and had higher levels of fatigue (mean fatigue 8 points higher, p = 0.03).

No shit. That’s why they were more likely not to be able to do GET – because they are more ill.

Clinicalfeatures for PRS patients … All patients described post-exertional fatigue ...

Yup. Funny how she doesn’t allow “post-exertional fatigue” (does she mean PEM?) as an inclusion criteria for her studies, but if any one who actually has it (ie a real ME patient) slips through they are immediately chucked in the PRS bin.

By the way, the reason she’s so against PEM as an inclusion criteria is because even she can see that PEM and GET don’t go well together, and if the foregone conclusion of your study is going to be GET, you don’t want to include any patients with PEM who might bugger up the results.

At some time in the future she’s going to say “there appears to be a small sub-set of ME patients who experience PEM for whom GET may not be appropriate”, unlike all the other ME patients she studies with her lax inclusion criteria. We will become the exception, a sub-set, in her scheme of things.

Pain was experienced by all patients, four described sensory integration difficulties. Six had disrupted sleep pattern and six cognitive impairment (concentration, memory).

Sounds like she’s just identified the real ME patients.

Conclusions Clinicians should think about PRS in patients with refusal symptoms affecting, eating, social interaction, self-care, mobility and treatment. Patients have extremely high levels of fatigue and/or disability. Postexertional fatigue and disrupted sleep occur but patients are less likely to have characteristic symptoms of CFS/ME such as unrefreshing sleep. The diagnosis of PRS is important as the treatment is different.

Sick. Just sick.

The title of this study should really be:

G160(P) Case series of Pervasive Refusal Syndrome presenting with Chronic Fatigue Syndrome: avoiding the pitfall of having real ME patients in your dodgy study.

EDIT: And this is the epidemiologist who decides who gets included in the MEGA study?

 

[Barry53]

I'm so mind boggled by her skillful manipulation. It's so amazing. I wonder if she really believes what she is saying?! If so it's hard to trust a study she is involved in.

As I said a little while ago on another thread, I once pondered the plot for a book, where a psychiatrist exploited their knowledge and understanding of human psychology for selfish and immoral gain. I really have come to believe here that EC is deeply, deeply manipulative, and very good at it. It would be very interesting to know her psychological profile ... except she would know all the tricks to frig the results.

I also suspect that saying what she believes in may not be her strongest motivation, but instead may be motivated to say things, and engineer how she says them, simply according to what effect it will have on others. It is what natural manipulators instinctively do.

I wonder if some of her co-researchers fall under her spell? Must be some reason why the don't seem to cotton on.

 

[Countrygirl]

Aim Children with Pervasive Refusal Syndrome (PRS) present to paediatric services with symptoms of fatigue, low mood and severe functional disability. Little is known about PRS or how to differentiate it from CFS/ME. We investigated differences in presentation between children diagnosed with PRS and those with Chronic Fatigue Syndrome (CFS/ME) in a large paediatric CFS/ME service. Methods We identified children with PRS by: reviewing the CFS database (assessments 2005–2011). We also asked the CFS/ME specialist service about patients they had assessed who had received the diagnoses. We compared routinely measured assessment data between those with PRS and those with CFS/ME. We retrieved notes from patients with PRS to identify clinical similarities between patients. Results Seven patients (4 females) received a diagnosis of PRS (mean age 13.5 years). Routinely collected assessment data was available for 6/7 patients (Table 1). Patients with PRS were similar to those with CFS/ME in terms of age, gender, presence of anxiety or depressive symptoms, time to assessment and pain. They were more disabled than CFS patients (mean SF-36 physical function 0 compared to 50, P = 0.02) and had higher levels of fatigue (mean fatigue 8 points higher, p = 0.03). Clinicalfeatures for PRS patients Six patients had impairment in eating (no disordered body image), self-care, social withdrawal and significant reduction in mobility and activity. Five refused treatment and three had communication impairment. All patients described post-exertional fatigue but un-refreshing sleep was only present in four. Pain was experienced by all patients, four described sensory integration difficulties. Six had disrupted sleep pattern and six cognitive impairment (concentration, memory). Conclusions Clinicians should think about PRS in patients with refusal symptoms affecting, eating, social interaction, self-care, mobility and treatment. Patients have extremely high levels of fatigue and/or disability. Postexertional fatigue and disrupted sleep occur but patients are less likely to have characteristic symptoms of CFS/ME such as unrefreshing sleep. The diagnosis of PRS is important as the treatment is different.

Thanks @slysaint

I understand EC advises paediatricians who recognise her as the UK authority that if the child is severely ill than a diagnosis of PRS is likely (or is it PAWS now?) as severe illness is 'not on the CFS/ME spectrum'.

Reading the above, her description of PRS is typical of severe ME. Poor kids! When the parents oppose the treatment for the alleged PRS then legal action can be taken.

It would be useful to have the full paper.

Does anyone have access to it please?

 

[Sidereal]

There is no such thing as pervasive refusal syndrome.

 

[Barry53]

There is no such thing as pervasive refusal syndrome.

There is ... in EC's head. Unfortunately that means lots of others believe it.

 

[AndyPR]

Does anyone have access to it please?

Sci-Hub can't access it sadly.

There is no such thing as pervasive refusal syndrome.

A Wikipedia entry for it does though https://en.wikipedia.org/wiki/Pervasive_refusal_syndrome - which proves nothing I appreciate but a layperson would give a lot of weight to the fact the page exists and appears to be well referenced.

Reading all of this with the added knowledge of ME that we have just makes it all so horrifying.

 

[Barry53]

My GET experience was that I was just told to start off small doing some actual exercise (on an exercise bike) then increase over time. Unfortunately, the first session (very mild) was enough to put me in bed and permanently disable me.

Do medical outcomes like this get formally recorded, and properly fed back in some way, so the real consequences can be statistically evaluated? If this was the outcome of any other medical procedure, we would be looking at medical negligence or malpractice; unfortunately here the practitioner is following the recommended practice.

 

[anniekim]

.
The therapists now talk about staying within a level thats not to much for you, but its still graded exercise or activity, with the objective to increase. Pacing does not have an objective of more activity, and is not therapist directed,
.

Yes, exactly, initally, Crawley in her clinic may advise children to decrease their activity, but she cleverly doesn't mention in the interview once a baseline is set she advises them to gradually increase, aka, GET.

 

[anniekim]

Actually for moderate pwme (not mild or severe) I think internet based teaching on pacing and improving sleep, with some Skype counselling for coping with chronic illness could be a great offer. When Crawley talks it sounds like this is what it is but I wouldn't call that CBT as treatment which will lead to recovery. in the radio interview on this thread she does subtly let on that the CBT is different, supporting this but not the same, but most listeners would miss this I think.

Sorry @Jenny TipsforME I am not following u well with the above. Are you saying EC is saying the CBT is akin to 'some Skype counselling for coping with chronic illness' ? Perhaps u r not, I got lost from when you wrote 'when Crawley talks'... It's important to remember that the type of CBT she is advocating is not for a form of counselling to help cope with the illness. The FitNet protocol on page 14 discusses a little what kind of CBT she uses, a bit vague, perhaps purposely, but she describes it clearly when she says in the interview

" 'Cognitive Behavioural Therapy is there to help people change important things, for example sleep and exercise. Now, in our clinic what we do is we help teenagers to wake up at the same time every morning, and restrict their sleep. That’s a very potent biological stimulus. Once you change your sleep, you change a lot of biology, you change the way your brain produces steroid, you change something called the hypothalamic pituitary axis, there’s loads of stuff you change. ".

So this is not supportive CBT for coping with a chronic illness but to change behaviour, according to her in the interview, such as sleep and exercise. She has said elsewhere she reduces exercise initially with her patients, but then from what she's written in the FitNet protocol under activity management she gets children to gradually increase activity, both physical and cognitive, up until, according to the activity management arm of her Fitnet protocol, "the child can do a minimum of eight hours of cognitive activity a day!" See page 13 and 14 for descriptions of the activity management and CBT arms of the Fitnet trial. http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0007/170962/PRO-14-192-109.pdf

She is careful not to say in her interviews and in the FitNet protocol whether the CBT she uses also gets children to increase activity eventually, but I suspect it will with no acknowledgement of the underlying energy dysfunction and that patients have a ceiling which they can not go above without the disease getting worse/crashing.

Also from my own experience of sleep with this illness, I'm concerned when she talks about reducing sleep (children probably need more sleep than usual to heal) and changing sleep patterns. When I came down with M.E 18 years ago I could never change my sleeping pattern which had shifted to 3am - 11am. I couldn't be up earier in the morning without feeling even more dreadful and being able to function even less. Eventually a doctor told me if I did not change my sleeping pattern I would not improve. With great reluctance and against my better judgement, as previous attempts had never worked, I followed this doc's advice and took sleep meds to make me go to sleep earlier and wake up earlier even though I was getting sicker and sicker and after a couple of weeks I suffered a catastrophic relapse becoming bedridden24/7 for 2 years after 5 years of being moderately affected. Only a few years on did another doctor prescribe me low dose hydrocortisone due to low cortisol in a blood test which helped me to restore more normal sleeping patterns with mornings being no worse than the rest of the day, though no better healthwise overall. (Bedridden 24/7 again since 2012). Messing with my sleep patterns was a disaster for my health and did not fix the low cortisol without the hydrocortisone, so her theory that a change in sleeping patterns alone will alter the hpa axis/biology did not fit with my experience. I needed the hc.

 

[Barry53]

So this is not supportive CBT for coping with a chronic illness but to change behaviour, according to her in the interview such as sleep and exercise.

But it is still supportive, indirectly, and not directive. The changed behaviour is still with a view to people coping with their problem better, not fixing their underlying problem. So it is definitely a purported shift on her part.

 

[Barry53]

except to say that EC is thoroughly sick.

Pity it is not with ME.

 

[Sidereal]

Personally I'm totally opposed to CBT, even the more seemingly benign forms for 'coping' with illness. CBT is a sick joke and in my opinion it has no specific efficacy against anything except simple phobias in which case good ol' exposure-desensitisation is all that's needed.

I think the presence of this horde of unskilled CBT therapists, fatigue clinics etc. all give the false impression that there are services available for patients and that something is being done treatment-wise. While not all forms of CBT may be as directly damaging as the sort of CBT prescribed in PACE which is aimed at modifying false illness beliefs and avoidant behaviours, I think all CBT is indirectly damaging in the sense that patients are being delayed or blocked from accessing more effective forms of treatment (as is the case in depression for instance where bullshit like CBT may delay effective treatment with drugs and other things) and in the case of ME it has resulted in no attempts being made in the UK to find effective biological treatments because supposedly effective treatments already exist.