Brave Sir Prof Wessely discusses death threats 29th March 2017

[Mohawk1995]

Of course we don't make death threats. We never have. Which is why Sir Wessely's pity-party at our expense is particularly egregious.

That was meant as a rhetorical statement. I was implying that aggressiveness does not serve the cause of bringing people together and likely just pushes away people who are likely to support the cause.

I agree that Wessely's pity-party is pure foolishness and offensive. As President Truman said "If you can't stand the heat, then get out of the kitchen."

 

[Mohawk1995]

Those things happen rarely in demonstrations. But much like in the 1950's and 1960's, protestors are being characterized as violent and criminal.

If you mean that rarely are demonstrations disrespectful in the US, I would disagree. But we could debate that all day long.

What I am saying is that the most successful protests (like those of Martin Luther King Jr) are done in a respectful manner and serve to bring people together, not divide. Even in the face of MLK's assassination, the peaceful and respectful protests continued to win out.

Wessely and the fools that follow his recommendations will hang themselves. The unfortunate thing is that he was listened to in the first place and that as a result many people's lives have been so negatively impacted. I say we move in a direction that brings more people to the table in support of the cause. In my opinion that is the way to prevent further disasters like what has occurred in the UK with the "Wessely" approach.

t appears some on here are opposed to one expressing their unmitigated disdain towards certain individuals.

Not opposed at all. I get this is a forum to voice complaints and issues we have against others. Just want to make sure we are not chasing away those whose support we could use..

 

[A.B.]

AIDS protests were a huge success, and they were more aggressive than our protests and online venting.

You have to consider that we as patients, are looked down upon, fed scraps at best. It is socially acceptable to mistreat and lie to us. It is considered good to deny us treatment. The oppression is perfect. Things that would be considered unacceptable if applied to other groups are applauded when applied to us. This situation is not an accident. It is the result of a series of deliberate decisions and we have opponents that stand to lose from this disease getting the respect it deserves.

This is not the time to be nice and try to avoid upsetting anyone. It is also unwise to trust a system that has mistreated us in the past. Trust will come back once the system starts working in our interests again.

I also think that being angry is entirely justified. Our lives are being ruined, first by the illness, second by the neglect. This is not difficult to understand. We have no reason to be ashamed for being angry.

Who wants us to be ashamed for being angry? The Wesselites, for obvious reasons. Don't be ashamed. Just make sure you are armed with facts.

 

[Undisclosed]

Unfortunately we had to remove quite a few posts from this thread. Many of them weren't even rule breaches, they just weren't applicable anymore because of other posts that were removed -- posts that were of a defamatory nature - referring to somebody as a 'protector of pedophiles'. There is absolutely no proof of this and this kind of accusation can destroy a person -- professionally and personally. It also gives patients a bad name -- guilty of smear campaigns -- it only takes one person. We always remove posts that either could be construed as defamatory or are defamatory to protect our members.

Please don't call members 'trolls'. If you think somebody is here to 'troll' us, then report it and let the mods deal with it.

Thread is back open. Please stick to the topic at hand and avoid any personal attacks and off-topic posts.

 

[Hajnalka]

Thank you, Kina!

I know I should stick to the topic and I'm sorry, just wanted to tell you guys, that I skipped again through the thread after the moderation and chuckled because we all sounded a little awkward with some parts missing. And when suddenly A.B. said (seemingly) out of nowhere

I woke up at 8:20, thank you.

I just couldn't stop laughing, lying in bed, all alone and really loud. Feel severely ill today and it was perfect to have a good laugh. So something good came out of this! And now back to the topic!

 

[Jonathan Edwards]

Not opposed at all. I get this is a forum to voice complaints and issues we have against others. Just want to make sure we are not chasing away those whose support we could use..

I think I can reassure you, as a scientist with an interest in ME, that not a single scientist of value to the ME community is going to be discouraged by critique of the very poor science that has gone before. They will be encouraged to see that patients have a keen and intelligent interest in scientific standards. The idea that anyone who knows what they are doing would be put off by pointing out that the PACE trial is worthless is ridiculous, just as it would be ridiculous to suggest that oncologists would be put off by criticisms of homeopathy.

The protestations about this from the PACE lobby are simply nonsense.

 

[Mohawk1995]

The "those whose support we could use" I am referring to are those who come into the conversation now (maybe not even really exposed to ME/CFS) and have the opportunity to be advocates for all who are impacted by it. I certainly did not mean that we should be about swaying the opinions of the arrogant scientists who think they have this figured out and that the patients just need to try harder. I completely recognize the scientists of value to the ME community and am thankful that they continue on in their work in spite of many obstacles placed in their path.

I also don't discourage people from expressing their opinion or even their outrage. I just don't feel like viciously attacking someone ever did any good. If the other person is arrogant, as in this case, they will just feel justified in continuing with their opinion. If it is someone who already supports your position, they will look beyond how it is being said. The only people we can impact of consequence in this situation, are those who have the right intentions but are not clear on who to support or have listened to the misguided instruction of others. Those people are less likely to respond positively to vicious attacks even ones that are just words.

 

[Jonathan Edwards]

The "those whose support we could use" I am referring to are those who come into the conversation now (maybe not even really exposed to ME/CFS) and have the opportunity to be advocates for all who are impacted by it. I certainly did not mean that we should be about swaying the opinions of the arrogant scientists who think they have this figured out and that the patients just need to try harder. I completely recognize the scientists of value to the ME community and am thankful that they continue on in their work in spite of many obstacles placed in their path.

I also don't discourage people from expressing their opinion or even their outrage. I just don't feel like viciously attacking someone ever did any good. If the other person is arrogant, as in this case, they will just feel justified in continuing with their opinion. If it is someone who already supports your position, they will look beyond how it is being said. The only people we can impact of consequence in this situation, are those who have the right intentions but are not clear on who to support or have listened to the misguided instruction of others. Those people are less likely to respond positively to vicious attacks even ones that are just words.

I can understand your concern, Mohawk1995, but the interesting thing is that I am just the person who you are referring to and the impact on me has been quite the opposite. I came to ME research completely unaware of the issues. I became interested and then started hearing all this stinging criticism of the PACE study. I asked myself why people are so angry? And then I realised why they were so angry was because they are faced with appalling science being deliberately passed off as good science. More than that, with the poor scientists accusing the patients of malice. So, quite out of character, I started rooting for these patients and writing things on the net and in peer reviewed journals and in front of the deputy chief medical officer and to an editor at the BBC and in a letter to the Lancet and so on and so on. And my scientific colleagues got fired up as well and started doing research and publishing papers - just to show that they thought ME needed taking seriously.

So in a nutshell, it took all this stinging criticism to wake us up and get us on board as advocates. Now that I am retired my main job is to encourage those who I think have good ideas and to cry foul when I think people are being intentionally misleading. In fact I now seem to be earning my living in the law courts doing the latter. ME is a sufficiently deserving cause for me to spend my time trying to help for free. The culprits here deserve at least as much criticism as they are getting from patients. Their behaviour is outrageous.

 

[Snow Leopard]

This thread needs more Monty Python jokes.

 

[Countrygirl]

I can understand your concern, Mohawk1995, but the interesting thing is that I am just the person who you are referring to and the impact on me has been quite the opposite. I came to ME research completely unaware of the issues. I became interested and then started hearing all this stinging criticism of the PACE study. I asked myself why people are so angry? And then I realised why they were so angry was because they are faced with appalling science being deliberately passed off as good science. More than that, with the poor scientists accusing the patients of malice. So, quite out of character, I started rooting for these patients and writing things on the net and in peer reviewed journals and in front of the deputy chief medical officer and to an editor at the BBC and in a letter to the Lancet and so on and so on. And my scientific colleagues got fired up as well and started doing research and publishing papers - just to show that they thought ME needed taking seriously.

So in a nutshell, it took all this stinging criticism to wake us up and get us on board as advocates. Now that I am retired my main job is to encourage those who I think have good ideas and to cry foul when I think people are being intentionally misleading. In fact I now seem to be earning my living in the law courts doing the latter. ME is a sufficiently deserving cause for me to spend my time trying to help for free. The culprits here deserve at least as much criticism as they are getting from patients. Their behaviour is outrageous.

Three cheers for @Jonathan Edwards !!!!

My goodness, it did my heart good to read the above, especially as yesterday I received a letter from my surgery to refer me to one of the 'doctor/researchers' to whom he is referring..........after 35 years of ME. I was very down hearted as a result but the above post has cheered me. Thank you!

 

[Binkie4]

@Jonathan Edwards

Thank you most sincerely.

 

[Barry53]

Fully agree and much heartened by @Jonathan Edwards words above albeit not surprised by them, my having been on these forums a little while now. I can also see where @Mohawk1995 is coming from. The stronger the groundswell of public understanding regarding ME/CFS (hugely assisted by truly good scientists), the wider that understanding will spread to less scientifically qualified people; but people who nonetheless are ever more crucial to fully exposing the sham science and scientists that control public and medical opinions today, and helping counteract their sham science, sham compassion, propaganda machine.

But of course there are a great many genuine but misguided scientifically aware medical professionals also, and for those I do not doubt Jonathan Edwards' approach will eventually win through.

 

[cfsStevew]

Thank you Jonathan Edwards. THANK YOU!!!

If only there weren't more like you prepared to speak out. Is it coincidence that the most vocal advocates such as yourself and Malcom Hooper are retired?...are people in the establishment concerned about speaking out against these people?

 

[Countrygirl]

Thank you Jonathan Edwards. THANK YOU!!!

If only there weren't more like you prepared to speak out. Is it coincidence that the most vocal advocates such as yourself and Malcom Hooper are retired?...are people in the establishment concerned about speaking out against these people?

I know of a couple of consultants in our county hospital who have quietly said that they do accept the reality of ME, unlike their colleagues who are particularly hostile to patients with this diagnosis, but they said they won't defend the patients against the behaviour of their colleagues because they would lose the respect of the other doctors and it would damage their career. (My mum would have called them 'gutless wonders' ) I think this does suggest that a doctor who values his/her career can only speak out once they are retired.Even then, of course, if they actively help patients they are still dragged before the GMC, like Dr NS, who was reported by EC.

 

[cfsStevew]

I know of a couple of consultants in our county hospital who have quietly said that they do accept the reality of ME, unlike their colleagues who are particularly hostile to patients with this diagnosis, but they said they won't defend the patients against the behaviour of their colleagues because they would lose the respect of the other doctors and it would damage their career. (My mum would have called them 'gutless wonders' ) I think this does suggest that a doctor who values his/her career can only speak out once they are retired.Even then, of course, if they actively help patients they are still dragged before the GMC, like Dr NS, who was reported by EC.

thats very sad...I might understand someone in a lower position keeping quiet but once someone gets significant standing, if the science is bad, they should speak out about it - and be applauded for it...

 

[me/cfs 27931]

Thank you Jonathan Edwards. THANK YOU!!!

If only there weren't more like you prepared to speak out. Is it coincidence that the most vocal advocates such as yourself and Malcom Hooper are retired?...are people in the establishment concerned about speaking out against these people?

My impression is that my doctors are already overworked, with patient panels of around 3,000. So that even the passionate supportive ones barely have the time and energy to do their job, much less take up ME/CFS patient advocacy.

 

[Snowdrop]

Perhaps there is hope in that if the number of people who know what this illness truly is grows enough it will seem less risky to speak up and that will be a turning point. So getting the information out there in the UK is important.

 

[Mohawk1995]

I came to ME research completely unaware of the issues. I became interested and then started hearing all this stinging criticism of the PACE study. I asked myself why people are so angry? And then I realised why they were so angry was because they are faced with appalling science being deliberately passed off as good science. More than that, with the poor scientists accusing the patients of malice. So, quite out of character, I started rooting for these patients and writing things on the net and in peer reviewed journals and in front of the deputy chief medical officer and to an editor at the BBC and in a letter to the Lancet and so on and so on. And my scientific colleagues got fired up as well and started doing research and publishing papers - just to show that they thought ME needed taking seriously.

I will add my admiration for what you have done and are doing! I also admire the respectful way in which you communicate. People's frustration and anger is warranted. I just want to do everything I can to bring more people to the table. I will have the opportunity to share with my colleagues in healthcare in the next month. I am hoping I have a response even remotely close to yours.

So now I have two Jonathon Edwards I have respect for. The other one lived in the early 1700s.

 

[Jonathan Edwards]

Is it coincidence that the most vocal advocates such as yourself and Malcom Hooper are retired?...are people in the establishment concerned about speaking out against these people?

No coincidence at all. Self preservation is the order of the day for younger chaps. Dead Parrots like Malcolm and myself, are likely to be at the forefront here. It is only once one has been in the comfy chair a while that one can speak out about the torture that is inflicted on others. But Dead Parrots have their unexpected uses. If only I had the energy on 29th March to pop down to Goldsmith's and to murmur from the back row:


SPAM, SPAM, SPAM, SPAM
SPAM, SPAM, SPAM, SPAM
SPAM-SPAM SPAM-SPAM SPAM

Trouble is they don't tell them like they used to, do they, SL.

 

[lilpink]

If only I had the energy on 29th March to pop down to Goldsmith's and to murmur from the back row:

And would they let you in? I expect 'vetted' might be taken to new lengths?