Jen Brea comments on Esther Crawley's behaviour

There is much to continue to be concerned about as @Countrygirl may be able to confirm, EC has drawn up diagnostic criteria for PRS or PAWS ( persistent arousal withdrawal syndrome) which has PEM as a symptom ....

 

I used to believe this but current events shows facts mean little, if people want to believe lies they not only do so but they will scapegoat reality and victims when those lies predictably fail.

I know little about PRS so i can't comment but Ester is a loose canon with lots of ammunition and an ax to grind against ME/CFS patients and reality.

 

I think ego probably knocks insight into a cocked hat.

 

Lest we forget; Action for ME :
https://www.actionforme.org.uk/reso...he-aim-of-the-paediatric-study-youre-funding/
"
Led by: Prof Esther Crawley

Aim: This severe paediatric M.E. surveillance study aims to measure the incidence, demographic and clinical features of severe paediatric M.E. in the UK.

Prof Crawley says: “We will use a national surveillance unit to contact more than 3,400 UK paediatricians and find out whether they have seen a child with severe CFS/M.E. in the previous month. We will collect information including their age, gender, how the child presented, what treatment they received, how long they were unwell and information to determine if other diagnoses have been considered (eg. anxiety, depression, eating disorders)."

AfMEs Head of Childrens services Mary-Jane Willows who has backed and helped promote all of Crawleys 'research'.

 

From my personal experience, "anxiety, depression, eating disorders" are the first diagnoses to be considered, once all physical tests have returned "normal".

I dread to think how many children in the UK continue to be misdiagnosed and treated inappropriately by mental health professionals. Paediatricians stare severe ME in the face, clueless as to what they are looking at or what to do about it.

This surveillance study is little more than the blind leading the blind.

 

Whilst I agree with @Jonathan Edwards's urge for caution re petitions, I am concerned about the harm (possibly permanent) being done to children at Bristol University, and share the worries of many including @Peter Trewhitt and @Liv aka Mrs Sowester, and propose that a petition be considered via https://petition.parliament.uk/

I attach excerpts from some of the emails here that I think support this. Apologies for any errors - my brain is not at its best at present!

@Adrian:

"At the least Bristol university should be distancing themselves from what she is saying. But I think they should go further and exercise some governance. I see what she is doing as increasing stigma for ME patients and she is doing it as an employee of bristol university and whilst taking government money as wages. As such she should be held to account for her actions." (my highlighting)

@Luther Blissett:

"Petitions are usually addressed to someone with the power to stop a certain action."

@Alvin:

"Though we should not be afraid to use the law, petitioning the government (if they have been shown to be friendly to science) might be worth it, they have the ability to rein in her power to take children away from their parents and "treat" them, and i bet most government officials don't know that she has done this to children and if made a huge news story may prompt action. Also the fact the inventor of LP was barred (legally?) from promoting LP for ME/CFS is worth fleshing out, she is doing it for him, her scamming is no more acceptable then him using the same lies.

Sometimes the legal system is also worth using, i would have liked to see her face legal consequences for taking away children and paralyzing them potentially for life with her quackery treatment and lies, and i believe there is one being fought right now where someone's child is under threat of forced "treatment" unless they improve by a certain date."

@Sean:

"Academics have the right to put forward new and controversial ideas. In fact that is almost their job description (on the research side, at least). We should always defend that right.

They do not have the right to demand that those ideas get implemented in the real world, on real living humans, before they have survived rigorous testing (including safety where applicable), nor against the wishes of those having the ideas shoved down their throats under duress, sometimes extreme duress and intimidation in Crawley's case. We should always deny that 'right'."

 

I don't think a petition to parliament is a good thing, sorry.

They are under no obligation to even discuss the petition. I think petitions have to be a carefully used strategy, as the more signed without action following, the number willing to sign further ones falls.

There seems to be a lot of different motives given for petitions in this and related threads, I was suggesting one for the very narrow area of Crawley claiming to speak for us. That is because it is a very narrow but important topic, where part of the goal is simple enough -people signing-, and an area where we clearly have right on our side, and it would be hard to counter with Public Relations.

Broader petitions are less likely to succeed in my opinion. If you ask a group or institution to do something and they have the ability to claim they would not like to interfere, or can pass off responsibility to another group, they will do so.

A more local and simpler avenue for the concerns about children, would be for someone to contact either a MP or Council member, and ask for advice about notifying the local Children Safeguarding panel, or other strategy that is there for these concerns to be investigated.