Esther Crawley

Well, I've removed the question mark from the thread title.........It was actually meant as an intro to the piece she wrote........not as an actual question.
(We really need a 'rhetorical' emoji)

eta: did everyone who commented actually read the article?

 

Maybe my perception is a skewed but...

My concern is the danger of playing the man and not the ball. We want to have and keep possession of the ball, and we don't want to be benched. (Pwme have been benched for a decades.) The judgement of that can be a fine line and is based on perception.

I have some idea of where the line is for me personally, and I have to reign it in every time I feel provoked but I don't know where it should be for the community. And who get's to say anyway.

I think it's an important issue though because we haven't won the game yet.

 

Have we collated Crawley quotes and interviews anywhere yet?
It might be useful to do that in this thread. Her motivation in her own words rather than our armchair psychologising (which is fun, but ultimately pointless).

 

I noticed that she keeps saying Chronic Fatigue, and thinks that parents of children in deprivation have iPhones on which to chart progress.

That and the commitment to sleep deprivation for all patients.

It's obvious that she thinks that me/cfs is on a spectrum which goes

Fatigue>Chronic Fatigue>me/cfs.

 

Sorry SlySaint, I was writing my post in response to the discussion as it had developed when you posted.


My take away from the article was that she noticed a real need; that children with ME need help and lack appropriate specialist services.

This is true.

She may have tripped over something useful in that some teenagers who experience fatigue because they sleep too much respond well to the sleep therapy she offers.

That's me with my Pollyanna glasses on.

 

well played

 

Only a side comment:
In my opinion, in order to know or understand one's actions it is mandatory to understand the motive. As Sun Tzu put it "know your enemy and know yourself and you won't have to worry about the outcome" (for which he proposed spies), or for those who like Game of Thrones (I know, it's only fantasy): "Sometimes when I try to understand a person's motives, I play a little game. I assume the worst. What's the worst reason they could possibly have for saying what they say and doing what they do? Then I ask myself, 'How well does that reason explain what they say and what they do?'" (Littlefinger)

By the way, how would you differentiate between motive and intent, I mean not only by words?

Not necessarily. A psychopath has his agenda - could you speak of motive when no feelings are present?

(Not saying Crawley is a psychopath!)

I guess a human being always has some kind of motive. Unless he's a robot or a servant without own will, or certain parts of the brain are missing or injured...so most often it is reasonable to wonder about motives.

 

Is the motive relevant, or is it a distraction?

How would knowing her motive(s) help us?

 

Motive is the reason for doing something. Intent simply means the action was volitional - that someone wasn't forced to do something against their will, involuntarily intoxicated, etc.

 

@Valentijn,
Okay.

But isn't behind an intent a motive?

I personally think "motive" is major in a human being and his actions.

I won't say that an interviewee in a magazine would be comlpetely honest about one's motives. It looks good to say, if "I knew I only had five minutes left, I would hope to say, 'At least I did make a difference to kids with chronic fatigue'" - she most certainly has for now, in which direction might be part of a discussion. I am also very sure this is not what she might think during her last breaths; at least if it's true what people tell about "their last minutes". So, again, one is left with speculation.

Not words count, I would say, but actions and its fruits. This is very telling. And a look into the eyes sometimes.

My feeling is a "the poor victim"-game is played, plus "see, we're the good ones"-game. That's what I see - Tuller's blog, other articles and this one, too. There is a certain difference between what is said and what happens in reality...

 

I agree, when dealing with power imbalances one has to know how to play the game better then the powerful abuser.

It may, its best to understand your enemy when possible because it can lead to more effective strategies.
In our case we can understand her motivation and attack it directly or we can find a disease mechanism or treatment which will make her reasons not matter.

 

I have been reading the 2004
Management of chronic fatigue syndrome / myalgic encephalopathy in children and young people
on the RCPTH website which it notes
"
RCPCH notes: The guideline has been post-dated by the NICE CFS/ME guideline although some sections may still be of relevance.
"

I'm only part way through but a number of things have surprised me (considering the recent discussions with NICE about updating the 2007 guidelines).

The full pdf is here: https://www.rcpch.ac.uk/system/files/protected/page/RCPCH CFS.pdf


"
Paediatricians should undertake a thorough physical examination of all children and young people presenting with symptoms of profound fatigue at the earliest opportunity.

Particular components of the examination include:
•General physical examination including height, weight and head circumference
•A neurological examination (including ophthalmic fundal examination,gait and signs of muscle wasting)
•Lymph node/liver/spleen/tonsillar enlargement. Any abnormal clinical signs such as marked cervical lymphadenopathy need full investigation(28;40;61)
•Palpation over frontal, ethnoid and maxillary sinuses (to identify chronic sinusitis)
•Lying and standing BP and HR (for evidence of Postural Orthostatic Tachycardia Syndrome (POTS) or postural hypotension) (56;71), ((72;73)Level 2+)

Additional non-invasive tests which may be undertaken in the initial physical examination
and may help with making a differential diagnosis or identifying groups of symptoms
needing symptomatic treatment include:
• Tenderness score at pressure points (FMS inventory ((56;74;75) Level 2+)) to
help with differential diagnosis of fibromyalgia, which has overlapping symptoms
with CFS/ME ((75) Level 2+), (76))
• Assessment of joint mobility and any cutaneous features (scarring or
hyperextensibility) to help make a differential diagnosis of EDS (56)"

Routine tests on all patients should include a blood test and a urine test for
the following investigations:
·FBC & film to exclude anaemia, iron deficiency and leukaemia
·ESR (or viscosity) (unlikely to be elevated in CFS/ME (77;78)) and CRP
(c-reactive protein) (a high level could suggest autoimmune disease, e.g.
Systemic Lupus Erythematosus, or chronic infection, e.g. Tuberculosis)
·Blood glucose for diabetes mellitus ((22) level 2+)
·Blood biochemistry (Na, K, creatinine) to look for renal impairment or
endocrine abnormality (e.g. Addison’s)
·CK for evidence of muscle disease
·Thyroid function because early clinical signs of hypothyroidism may be very subtle
·Liver function (transaminases: AST, ALP and albumin) for hepatitis
·Urine tested for protein, glucose/sugar, to exclude renal disease, diabetes
mellitus (22) level 2+); tested for blood leukocytes and nitrites to exclude
urinary tract infection

Second Line Investigations
The following tests should not be done as routine and should only be undertaken
when symptoms and or signs and or results of previous investigations suggested a
particular differential diagnosis or set of diagnoses. The list of potential investigations
is exhaustive and the table on page 29 gives some indication of the wide range of
possible tests. A few important examples are:

·Blood tests for antinuclear antibody, immunoglobulins, coeliac serology, Lyme
disease, toxoplasma, brucellosis antibodies, copper & caeruloplasmin, cortisols
& Synacthen test, B12, folate, ferritin, carbon monoxide (blood
carboxyhaemoglobin)
·Urinalysis Organic acids (glc/ms), amino acids (by 2D lc), toxicology screen
·Imaging:Chest X-Ray
·Formal educational & psychometric assessment
·Formal psychiatric assessment:in order to establish a psychiatric differential diagnosis"

"Viral titres or other viral tests to impute or exclude current viral infection
are not recommended apart from EBV IgM, IgG and EBNA."

"Assessment of other immunological parameters such as lymphocyte markers may
form part of research protocols but are very unlikely to contribute to routine clinical
management"

Unsurprisingly it has several pages on the psychological well-being assessment.

But it seems that a lot of tests (eg POTS) were dropped or considered not necessary in the 2007 guidelines (I've only skimmed thro them so if I might have missed them(?) but recently I remember reading that MEA are trying to get POTS and OI included(?))

but also in the existing guidelines it says
"After a patient is referred to specialist care, an initial assessment should be done to confirm the diagnosis.".................so what tests/assessments do they do?(apart from the psyschological one).

I remember reading one of ECs research papers that says they relied on the GPs diagnosis and that for a number of the subjects they didn't actually have confirmation other than for 'Chronic disabling fatigue' (CDF).

Does any of her research actually say what tests were done to confirm diagnosis?

The more I read this stuff the worse it gets.......

 

Agreed.

I am thinking of starting a similarly named thread entitled, "Esther Crawley - WHO drives her?". I nominate Thelma and Louise . . .

 

I think she is genuine, but she is rather gullible and doesn't make a very good scientist. Science is not about trying to confirm your preexisting beliefs, but that is all she seems to be doing with her poor quality study designs...

 

Do you think she genuinely thinks she got an email threatening to cut her balls of when the said email was actually an artist mock up of a claimed verbal remark by an unproven phone call that was said to have been received by Simon Wessely.

Maybe she has a preexisting belief that she did receive that email too or maybe Wessely told her she did and shes so gullible that she went on stage to talk about it.

 

It depends, when dealing with "classic" abusers its been found they often escalate their abuses out of "fear" and justify it as they are the ones being persecuted by those they are abusing, as if its a dog eat dog world, on some level their actions show how terrible the world is to them hence they are not the abuser, they are actually the victim and are only "protecting" themselves.
Not sure if this is actually how she is operating but its a possibility.

 

Yes, she has been deliberately and knowingly dishonest about some things. In light of that, it is hard to believe that her career is built upon well-intentioned and innocent mistakes. At best, she may believe that it's okay to lie to get the result which she earnestly believes is the right outcome.

For example, she might be completely convinced that CBT/GET/LP can cure ME/CFS, so deliberately abuses scientific methodology and basic facts to "prove" they are they cure. She might believe that she's doing the right and honorable thing with her work, and that patients would only oppose her work if they were unhinged militants.

Her view of the world may be fueled by delusions, but she is certainly willing to deliberately lie and engage in pseudoscience to create support for those delusions. That also suggests she feels a substantial indifference or even hostility toward those who disagree with her, if not with patients in general. Basic human compassion does not stop her from attacking others in the process of defending her beliefs.

 

I think she is "genuine" in the sense she is utterly convinced she is right, and cannot conceive that others opposing her can be at all right. I think she is gullible in the sense she misjudges and underestimates the mere mortals who oppose her beliefs (she calls it science). And yes I think she mistakes a closed self-fulfilling belief system for science, which makes for great religious zealots, but poor scientists.

 

The theme of martyrdom doesn't just run through her public comments, it practically gallops.