The ME community can harm patients

Messages
5,256
Likes
31,992
If it helps this was my original English text:
Dear Editor,


I was saddened to see the misleading article by Live Landmark in your paper ‘The ME Community Can Harm patients. I am a professor of medicine at University College London and also a director of the largest ME/CFS online forum, Phoenix Rising.


Ms Landmark claims that the negative approach on forums can harm patients. She likes to give the impression that she is talking from a position of informed science. Yet in reality the piece is little more than an advertisement for an unproven treatment, cognitive behavioural therapy (CBT), wrapped up in the most negative message of all: ‘It is all the patients’ fault’. Even if there are psychological issues involved in this illness someone involved in psychotherapy should have enough understanding of human nature to realise that writing this in a public newspaper is likely to be counterproductive, as well as offensive.


The claim for the effectiveness of CBT rests largely on the UK PACE trial, which, with the combination of unblinded treatment and subjective endpoints, fails the most basic standards for reliable trials. The most robust evidence from PACE is that there is no measurable effect of CBT on objective measures of rehabilitation. (The paper Ms Landmark uses as an excuse for her article is not remotely scientific.) Ms Landmark seems to be unaware that everyone in the scientific community working on ME/CFS is agreed that it is a physical, or biological, problem. Moreover, the empty discussion about whether it is mental or physical is irrelevant to the justification for CBT. Her whole article is a muddle of disconnected arguments and insinuations.


In contrast to this sort of pseudoscientific approach, the Phoenix Rising forum provides a venue where patients can exchange ideas at all levels, and this includes rigorous and detailed analysis of scientific research. Discussions include a range of unproven therapies and patients are at liberty to give their personal opinions. However, amongst these, CBT is the only one with virtually no support.


Psychotherapists seem to be unaware that communication with patients cannot be limited to neatly packaged sessions for which a fee can be charged. We live in a world where anybody can find out about anything. If psychotherapists have something useful to tell patients with ME/CFS and interested researchers like myself then why do they not post this on the internet? What is it that they ‘know’ that we don’t? And we have no evidence that whatever psychotherapists tell patients needs to be delivered in person. Therapists argue about whether other therapists are ‘properly trained’, which simply highlights the fact that since we do not know if CBT is of any real value nobody can know what proper training is.


If Ms Landmark is seriously interested in the welfare of people with ME/CFS she should come and join us on the forum and put her views so that others can judge and criticise them. I doubt she will be that keen to do so. She is unfamiliar with scientific critique it seems.


Yours sincerely,


Jonathan CW Edwards

Professor Emeritus

Department of Medicine

University College London
 

Esther12

Senior Member
Messages
13,774
Likes
28,351
Thanks a lot for that - Phoenix Rising gets some love.

Pretty punchy: I have to admit, that is less cautious on some points that I would be... being Professor Emeritus probably gets you a bit more leeway than that given to the typical ME patient! Not having to fill things with provisos and sub-clauses lets one sound more like a human being.
 

lemonworld

Senior Member
Messages
100
Likes
542
Location
Norway
When I was 17 i did the lightning process with Live Landemark. It didn't help me a bit. However, it made my family and friends expect me to just 'snap out of it' and be well, to be able to get back to my normal life. it made me push myself beyond anything, it made me struggle through school and the worst years of my life. and it gave me so much anxiety about my illness, feeling so guilty that i wasn't able to make my self well, feeling so bad and wrong and dirty for being ill. I've struggled with this feeling ever scince, and it's only after reading on forums like these and talking with other ME patients that i've started to let go of the guilt and fear that I was doing something wrong. The ME community is not harmful, I've seen so much kindness and generosity, and love and compassion, so many inspiring people that are willing to talk openly and truthful. It seems that Live Landemark finds people talking abouth things openly scary.. Well I think THAT is scary.

I'm 21 now and thinking about how me and the other teens in my group where brainwashed into thinking it was all our fault makes me so angry. LP has been the big thing in norway for ME for many years, and I can't tell anybody about having ME without being asked about doing LP. And even after I tell them that Yes I have done it and NO please don't ever suggest it to anyone ever again, they still believe in the papers. People really do believe that the papers tell the truth, and a true and nuanced picture of reality... I wish!

I do not want to believe that Live has bad intentions. I know she is a person with a family and she might believe that she is fighting for sick people, trying to make a better world. it might be. But I am very wary of anyone not supporting open discussion. Manipulating articles, bad use of reasearch, trying to take away the crediblility of patients that disagree with her... There is just so many wrong things happening here, I can't believe she's aloud to keep doing it.

And even if the process worked, even if every single thing she says is true, her actions is still not acceptable. This is not how you treat sick and suppressed people.

I wish I was able to word this better. I'm just so confused. how is this real? how do people not see how incredibly wrong this is? why do my friends and family that have seen me struggle for years, that know how this illness works and how it has stolen my life, how can they still support LP and live landemark.... i don't get it.
 
Last edited: