Hi
@Nephrofan and thank you for coming on here and explaining the situation.
I am really sorry that you feel abused through the tweets etc you have received regarding the postings of Esther Crawley's lecture and I can see how you unwittingly and innocently have been caught up in the middle of what is a very complex and emotive situation.
It would be very helpful to us as a community if you could provide details of the abuse directed at yourself and at Esther Crawley through you. The reason I ask for this is that Esther Crawley and a number of her colleagues have over many years painted a picture of ME patients as being abusive, militant and dangerous even. A whole community of millions of patients has been branded as this as a result.
Last year when a Court ordered the PACE trial data to be released, the judge found that these claims of abusive patients were completely unfounded and no examples could be supplied to the court of abuse other than 1 instance of one researcher being heckled at a lecture.
If we as a community knew what the abuse was we would be able to denounce it, call it out and say not in our name. But we are never told, we are never given the opportunity to denounce it and take a stand against it. We as a community of patients are just labelled as abusive, vexatious, militant for what may be the actions of a couple of people, who may or may not be connected to the ME patient community and for which no examples could be produced as evidence before a court of law. So it would be very helpful to know what the abuse was and who by.
Feelings run extremely strongly within the ME community regarding the philosophical model and belief system which Esther Crawley subscribes to and not without good reason. I really hope that you will do your own reading and research to understand why. It is clear from the lecture you were given a very one sided story as a story not supported by scientist, researchers and experts in the field of ME nor the patient community. I hope you are sufficiently intrigued to question what you were shown in that lecture. Why there might be such a strong reaction and what is the other side of the story because I am sure with a scientific mind you will be deeply troubled by what you find and what was presented to you.
Many people outside the ME community do not realise that patients have died and do die as a result of this belief system that Esther Crawley and her colleagues present and adhere to, it has had a huge influence on the medical profession, resulting in medical neglect and in some cases abuse of ME patients. All of us are continually on the receiving end of prejudice and often hostility as a result of flawed beliefs and flawed research undertaken not by scientists but generally psychiatrist, psychologist pushing a theory that the belief in. If you would like me to provide examples of this please ask. The impact on our lives is huge, the suffering beyond belief.
Many of our community are very seriously ill, bed ridden for years, unable to speak, eat or function, the views that Esther Crawley give of ME are just insulting and do not reflect the reality of this disease.
Many of our community feel very strongly regarding the work of Esther Crawley as it is experimenting with techniques on Children and Young people, techniques or practices which have left many 1000's of ME patients bedridden inflicting in some cases severe harm and disability. It is right that we as a community try to protect others from such harms but especially, especially our children and young people.
Esther Crawley has herself been responsible for causing families severe distress when children are severely ill and do not improve with her methods and she has effectively labelled them as mentally ill and in addition seen parents, particular mothers as causing or perpetuating the child's illness. There is nothing scientific about any of this, just a belief.
It is not a handful of militants who oppose her research but 1000's of patients, carers, scientists and researchers. For example, the slides from the lecture she uses the example of MEGA, the patient community were not against MEGA because they were against science they were largely against MEGA because of Esther Crawley's involvement and her largely anti scientific stance.
The community have absolutely no confidence in her given her unscientific stance, the community had absolutely valid and entirely justified concerns. The petition against MEGA got far more signatures than those in support of MEGA, this is not a minority of militant patients but the majority of a very ill patient community giving a resounding message of no confidence in a researcher who has caused and contiues to cause harm to our community and peddle some very unscientifc beleifs regarding this disease to the wider medical community.
It is very telling that Esther Crawley and colleagues are usually missing from the scientic conferences on ME/ CFS, they continue to ignore any biological and scientific advancements in the ME field, do not work collaboratively with scientifc researcher in the field and continue to peddle a belief system which is quite proposterous when you look at all the biological evidence from many eminent scientist from around the world.
What we as a community are fighting for is science and for a stop to be put to their anti science aproach and methods which is harming patients.
Esther crawley and Colleagues are making themselves the laughing stock of the scientifc commuity from which they have become increasingly isolated as with scientifc advancements their approaches appear more akin to magical thinking or religious beliefs.
Please, take a good look around this forum, Do we look anti science? please check out the threads on all the various scientific research papers. You will find many of our community who themselves are scientists, or are very capable of scientifc thinking, our objection is indeed to unscientific thinking.
Please reflect on the slide that Esther Crawley presented giving the following as factors involved in developing ME.
Education - read through the threads, do we as a community seem uneducated?
Criminal- do we seem criminal?
Drug Addiction- do we give the impression of being a community of drug or alcohol adicts
Abuse
and then other social conditions such as housing.
The image that she is seeking to portray that this disease is a result of social deprivation and mental health factors is a myth and gives completely the wrong impression as to the nature and cause of this disease. This is misleading and harmful. In fact she is likely researching fatigue caused by depression, not ME. Please reflect on what you see here, do we look like we fit into the patient group she is seeking to portray?
Conscientious, loving parents, suddenly find themselves suspected of and at times accused of harming their child, keeping or making them ill, by people such as Esther Crawley who refuse to accept the scientific evidence regarding ME because they want their beliefs to be true so badly that they ignore anything that may contradict their beliefs and practices. It is devastating.
I hope that you will take the time and trouble to research and understand more and that you will form an opinion and not remain neutral, an informed opinion based on science but also because you have a conscience and do not like to see people mistreated and harmed in the way this community has been.
Thank you and once again I am sorry if you have felt abused by anyone.
