Discussion in 'General ME/CFS News' started by Sushi, Jul 8, 2013.
Llewellyn at the end says that his programme aims to 'comfort the sick, educate the doctors and shame the government'.
And mr. Wijbenga agrees.
But we, the sick, are not looking for comfort. It's treatment we're after.
Guido den Broeder
Chair of the Dutch ME Association
I suspect that, as a journalist, Llewellyn King was referencing turn of the century American humorist Peter Finley Dunne’s observation that newspapers “comfort the afflicted” and “afflict the comfortable.”
The line shows up in the play “Inherit the Wind” where the reporter character (based on H.L. Mencken) says, “…it is the duty of a newspaper to comfort the afflicted and afflict the comfortable.”
Perhaps, but this is 2013. Patients want to get well, not pampered.
The situation in the Netherlands is that the government supports all kinds of foundations and associations where non-patients seek to 'comfort' us. They generally don't give patients a say in the matter and do not know what ME really is.
But we, the ME patients, who simply want proper diagnostics and medicine, get no subsidies.
I believe your criticism of Llewellyn King is misplaced. These are the objectives (comfort the sick, educate the doctors and shame the government) that he has defined for his interview show, not for governments or the medical community. Do you really expect Mr. King to enter a lab and discover the cause of ME and provide a treatment?
I believe the objectives he has stated for his show are superb and we could not ask for more from him. We are fortunate to have him advocating for us!
Watching his interviews give me great comfort. I am able to learn what the researchers, doctors and advocate organizations are doing to help bring answers and cures to this disease. Having this knowledge creates hope.
Yes, we want functional improvement and objective diagnostic findings. That is in part why we reject results from CBT/GET - I personally don't care if I feel a little better when guestimated, I want to be able to do more! Results that do not translate into real improvements in capacity are not results worth mentioning.
The other issue is a forty year failure to invest in medical research into disabling conditions. Now they are on the rise. If governments and private investment fail to invest then this has consequences. Yet the evidence is suggesting that there are reasons why these illnesses are on the rise that are not explained by living longer or any psychosocial explanation I have seen. Whether its diet, lifestyle, vaccines, modern transportation leading to rapid globalization of pathogens, the proliferation of chemicals with dubious or unknown long term effects on health: nobody knows for sure, but there are strong reasons to investigate. All of these things have been implicated in ME at one time or another.
By pointing out disturbing things (disturbing to entrenched views) Llewellyn King is doing us a huge service. I am a fan of what Llewellyn King is doing. Its not perfect, but its a start. We need more like him, and then ... well, we just need more of everything, especially research. Part of the problem there is politics - so few with the power to change things have any clue about ME. Llewellyn King is at least doing a little something to address that. Its not everything, but its more than most ever do.
In this case, I'm sure that the use of the phrase "to comfort" is just a poetical way of saying "to help." It stands in for "to give hope to," " to inform," "to raise awareness of," "to give voice to," etc... in regard to which I have nothing but admiration and gratitude for Mr. King's remarkable efforts.
I interpreted his aims as being to comfort patients by letting them know about all the research being done and treatments being used by our experts - the der Meirleirs, Petersons, Chias and so on. I don't think there's a real conflict here between 'comfort' and 'treatment' in any meaningful sense.
It's a difference between day and night...
I do like a number of the interviews, especially those with dr. Chia and dr. Peterson, but with another aim the series could be so much more powerful.
I've been ill for 26 years, left without treatment, income or help of any kind. And so many of us are in such a desparate situation in my country. 'At least doing something' does not cut it for me.
I don’t believe Sasha is saying that they are the same. My interpretation of her statement is that they are NOT mutually exclusive. There is a place for both.
Those with an expertise in communication and information sharing (Mr. King) can do their part and those with the expertise and resources to carry out research and provide treatments should do theirs. Because governments and the medical community have been remiss (historically) in doing their part, Mr. King is trying to use his expertise to help educate and motivate those entities.
I don’t expect Llewellyn King to ever develop novel treatments through his interview show. Although, he may one day communicate them to us.
With the current objective: no, I don't see that being communicated.
We have so very few people both willing and able to make an effort, that it is absolutely necessary to work together and be on target. But it's not happening here.
Personally I have found Llewellyn King's reporting through ME/CFS alert videos very helpful in sharing the knowledge and experience of some of the leading ME/CFS specialists with the public and with a community of patients that would not ordinarily have access to this knowledge and experience.
He is a public figure who has gone out on a limb for us. Thank you Llewellyn King!
That's all very well, but you are eating the cakedough where I prefer the cake.
Llewellyn King is a journalist not a medical researcher or doctor. He is doing what he does best--spreading the word.
I'm sorry that being a fan prevents you from understanding the issue that I raised. That happens a lot in ME land, also with certain doctors that almost seem to have groupies rather than patients.
I thought we were talking about Llewellyn King's role in making information about ME and it's possible treatments available to the public. He has interviewed a very wide sample of doctors and patients with all sorts of varying approaches. From everything I have seen of his work, he is open to exploring any approach to treating ME that has had any degree of success.
I certainly don't find him biased toward any one approach or doctor.
Yes, I know that you thought so. But I was talking about something else: the missed opportunity to, with the same effort and dedication, instead create something that actually has an impact on our cause.
This was the purpose of the project Science for Patients as designed by Lotte and me. It was part of a concerted effort to raise awareness, in synergy with other projects like the production of a guideline and collecting data. By stealing our subsidy, mr. Wijbenga set us back for over a year. Sure, he made some videos, but they are a random walk, have no co-ordinated message, and hence no impact (which may in fact be a good thing because dr. De Meirleir now seems to claim that ME=Lyme).
Going off topic here, but actually, that's not at all true. If you want to give a link to a quote from one of his publications or a link to one of his videos to support this, that would be welcome.
Hi, thanks for letting us know where you are coming from. It can be frustrating when you see funds diverted away from a good cause to something that is ineffective. But this doesn't have much to do with the good work that Mr King is doing in creating personal awareness of ME / CFS and the experiences of the people who have it.
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