Esther Crawley

There are certain personality types who exhibit a key behaviour: accuse others of the characteristics they themselves strongly exhibit, and then seek to gain the high ground by claiming to decry such characteristics, and to claim how they want to set things right again. You only have to look to the recent US elections for very many examples. Sadly it is all too common.

A very good example by the way.

 

I have never cared if they want to study chronic fatigue. It could even be useful. But why did they have to pull in ME and destroy our lives when they are not interested in any of the symptoms we actually get?

I would expect an eye doctor to be interested in knowing all about eyes not just blinking.

 

I have to conclude it's because it was ME they were first interested in, beginning with their reframing it as 'chronic fatigue syndrome' and moving it into the mental health domain. Then they pulled every other type of chronic fatigue into that ever increasing BPS domain, stealthily reframing 'chronic fatigue syndrome' as 'chronic fatigue'. Now they are seeing the founding, central condition for their work being pulled out from their territory and just can't allow it.

It's the only reason I can think of why they haven't just accepted 'ME/CFS with PEM' as a distinct condition requiring its own NICE guidelines (because of the potential for harm from inappropriate treatments such as GET) and instead change their focus of attention to all the other fatigue conditions. There is so many of these, why not just let ME go? [Edit: speaking from the BPS MUS perspective, not my own]

 

I agree, I am trying to see things from the BPS viewpoint - there is lots of fish in the sea from their perspective. I'm not saying it is right to lump them together, just that there must be some reason why they want to hold onto ME and keep it in their 'MUS' territory.

 

I don't believe that depression should incorporate fatigue, see my post here: https://www.s4me.info/threads/is-depression-a-quack-diagnosis.22366/

 

https://twitter.com/user/status/1446944817901182977

 

Shudder

 

This personal profile still says EC is

External positions
Deputy Chair CFS/ME Research Collaborative

she hasn't held that position for several years.

https://research-information.bris.ac.uk/en/persons/esther-m-crawley

eta: I came across the link in another covid-19 project she is involved in
https://www.phc.ox.ac.uk/research/h...tanding-experiences-of-Long-covid-in-families

 

https://www.bristol.ac.uk/academic-child-health/news/2021/prudence-trust-grant.html

 

The Prudence Trust doesn't seem very prudent to me. But then it was only set up in 2020 and has Simon Wessely on their advisory panel, so we're stuffed. I suspect some kind of astroturfing / territory grab going on here.

 

Well let's hope that research into mental health problems does actually confine itself to research into mental health problems, and nothing else. Researching into one condition, when it is actually an entirely different condition, can be very problematic, especially when the researchers make huge presumptions in their research about what they believe the condition is.

 

Hello Skycloud, I'm new so hope I do alright with this first comment.

Do you really think that her sleep therapy would work, particularly on teenagers? I'm old enough to remember that every few years for decades there have been articles/research studies hitting the news talking about moving the school day back because teenagers need more sleep/have different sleep patterns. It might make the people she has been selling to feel happy promising to 'fix this' (schools, parents) by forcing them out of it, but I can't see it helping - certainly in most who are ill with ME/CFS.

From personal experience (and this is where I'm curious if this is where there are different 'types' because its a no-brainer with me and some others I've come across) as a PwME even exercise - which did become very clear after trial and error and certainly in the medium-long term after giving it a 'red hot go' - is more convincing as worth trying than messing with sleep/rest. It might be an individual perspective as I had for most of my years of being ill been in a situation where enough rest was never possible so someone waking you and never ever letting you get the sleep you needed was the most destructive and long-term damaging thing (and it felt it at the time). Someone else messing with it, or yourself trying to almost immediately made the situation worse on that symptom (you get so tired by the manufactured 'allowed times' that you either can't sleep well or it becomes unrefreshing, and it never ever reverts to those times just builds up even more as deprivation). And on overall health. It was disastrous.

I can see that one would be an easy sell for a person who's not needing to go direct to the patient but their parent and schools who don't have the illness - 'we'll just train their sleep for you' etc.

 

Hello @bobbler and welcome to the Science4ME .

Firstly I should say that I don’t have a medical or science background, so I learn from others here.

I’m sceptical of any claims that E.Crawley makes for her work as the research she has published reveals problems under scrutiny. She has a track record of producing flawed quality research and spinning results and ignoring legitimate criticism. The comment I made referred to a small bit in an article that was just a piece of promotion for her work and clinic and there’s no evidence in it. Her research and methods do speak for themselves though, and there is information about it on the forum.

My post you’re referring to was made a long time ago so hard for me to think back. I think I was generally sceptical but conceding (in a flippant manner) that maybe some teenagers with fatigue did actually report being helped. But even that isn’t a straightforward thing to claim because there is no evidence given about those patients mentioned in the article to support what she says. For all we know they may not have had any other symptoms than fatigue, so shouldn’t be assumed to be same as ME/CFS. There are other possible issues too, just as for examples : some teenagers might just tell everyone what they want to hear, or it’s their wishful thinking, or perhaps the improvement would have happened anyway. So Crawley’s claim in the article can’t be taken seriously to mean anything about the wider group of teenagers or adults with ME/CFS. The place to look for it is in her research, and it’s a long time since I read any of that.

I’m old enough to remember this too. Not having to struggle to get 2 of my children out of bed when they were teenagers would have been wonderful! (They don’t have ME). I really don’t know if that research into healthy teens would say anything useful to compare with teens with ME/CFS.

I personally think, as a non medical person, that if you are ill and your body sleeps more then that is what your body needs, provided other bodily needs are met. I know that’s not possible for a lot of people. I’m so sorry your experience with sleep therapy made you worse. I hope you have found ways to manage your ME symptoms that work better for you.

 

Surely they cannot justify not having a register to check for how many needed emergency or non-emergency surgery for a set time longer than that? I say this assuming that ethics mean they cannot recruit those who would obviously need an appendectomy relatively urgently in that 6mnth space of time anyway. In which case the timeframe being measured doesn't cover when any real impact would actually occur.

Otherwise surely someone will have to say it is little more than creaking people through a 6mnth wait by pretending they are doing useful therapy. Without a control that has the same 'boosterism' they are basically comparing those who are worrying they have to wait and it might burst vs those who are being told 'well done on your hard work, you don't need an operation it's going so well' all the way up until the end of six months.

Thanks Skycloud. Yes I realised it was old only after posting my reply (I was looking at the thread because someone I knew had a relative whose child had been offered a referral there, and asked if I knew about it) - and can completely relate to the feeling of it being taken out of context somewhat as remembering back years ago to what you were thinking and referring to is impossible. So I appreciate your reply.

Indeed it is a stonker of a sales idea from her (ice to eskimos) but no idea if it even works with well teenagers (until they grow out of it), and no idea what the 'fatigue excl ME/CFS' is like and if it is helped by this.

I guess we will always be clueless as no you don't get/can't take much from her research.

 

That’s ok, bobbler. I just hope I make some sort of sense. My brain doesn’t have much stamina these days and it quickly fails me.

If your relative hasn’t read it I suggest they read the new NICE guideline. Clinics should now be following that. Perhaps you already suggested this. As well as content generally relevant for the care of all patients it has a section specifically about children and teens - it’s useful for parents to read because it’s not clear yet how well clinics are implementing it. I don’t know what the Bath and Bristol paediatric service are doing now but I’d want to know what they should be offering and what they shouldn’t.