We have a right to be angry, and I think 'angry patient' meme is fine, in context. I just don't see the point in covering points already made, given the discussion, on this particular issue, is all. That's just how I'm looking at it; I'm wrong about plenty of stuff.
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Gizmodo Article:The Battle to Finally Understand Chronic Fatigue Syndrome
- Thread starter Seven7
- Start date
That piece is not perfect, nor is it as heinous as one or two in this thread seem to think that it is. Researchers being threatened is factually correct. Christ, I know people on our side, including patients who have been abused and threatened by those who take against them. However, we know that those threats are then used as a smokescreen to divert from the genuine issues. I know that, because I've been ill for a very very long time and have followed things intimately. How could a journalist, writing for the first time, know every nook and cranny of the story? Yes, she appears to have misquoted Mary Dimmock, and that is poor, but I see no grand conspiracy or malice here, just as I saw none in Isabel Hardman's piece. She was simply a novice who took the word of one of those considered to be one of the most senior researchers in the area.
We know that there are journalists in the UK with agendas. Hanlon and Pemberton are prime examples. But that does not mean that we fly at every journalist who writes something which isn't quite to our taste and give them so much jip that they never hang around long enough to get to the truth. A certain amount of paranoia is understandable in our situation, with our deep understanding of the politics of this illness, but the whole world is not against us.
A brief story. A couple of years ago on Twitter I commented on a link another patient had tweeted. Five minutes later I got a message from an anonymous account named something like 'ME warrior' (I don't remember exactly). The tweet accused me of being Peter White. I protested repeatedly that I was not, each time being met with the response that I was. My avi was and is a picture of myself, a 39 year old man, and the account uses my real name. Eventually I persuaded him/her that I wasn't PDW. Instead they then concluded that I worked for the insurance industry, working in tandem with White. At this point I disengaged.
There are people representing (truthfully or otherwise) our community online who make irrational accusations at people. When a journalist writes a story on us and is immediately bombarded by (mostly) rational patients wanting to redress the balance and (unfortunately) a number of people who tell them that they should be 'ashamed' of themselves, that what they have written is 'mindless propaganda', or utter shite or accuse them of being part of some grand conspiracy, which side of the story do you think they'll write next time, if they aren't scared away altogether?
There is a patient on Twitter (he may or may not post on here, I don't know) who has compiled a list of every journalist he considers to have written an inadequate article on ME in the last twenty years so that when the truth outs he can contact every one and make sure they never forget they were complicit in the death and neglect of thousands of patients. I don't think that's a healthy situation, for the patient or our cause. I write freelance in another field when I'm well enough and I wouldn't touch our story with a barge poll if my initial foray into the topic was met with the stuff that some receive.
This battle will be won by research and the spread of information. The best way to spread that information as wide as possible is through the media. So how about we cut some journalists some slack before damning them and scaring them away. It's self defeating. @Viggers explained how this story and the media worked and a little background on the author who is clearly well intentioned. How would you like it if every day you did your job and then the fruits of your labour were dissected and flayed by a large group of folks on the Internet, who then sent you messages telling you how stupid and incapable you are?
I'm new to PR, although I've lurked for a long time. I like it, because largely media and research is evaluated by a large number of very intelligent, knowledgeable people. Criticism is mostly rational and constructive. It strikes me that raving about journos, charities and conspiracies in hyperbolic fashion is probably better saved for Twitter or Facebook or, preferably, just not shared at all.
We know that there are journalists in the UK with agendas. Hanlon and Pemberton are prime examples. But that does not mean that we fly at every journalist who writes something which isn't quite to our taste and give them so much jip that they never hang around long enough to get to the truth. A certain amount of paranoia is understandable in our situation, with our deep understanding of the politics of this illness, but the whole world is not against us.
A brief story. A couple of years ago on Twitter I commented on a link another patient had tweeted. Five minutes later I got a message from an anonymous account named something like 'ME warrior' (I don't remember exactly). The tweet accused me of being Peter White. I protested repeatedly that I was not, each time being met with the response that I was. My avi was and is a picture of myself, a 39 year old man, and the account uses my real name. Eventually I persuaded him/her that I wasn't PDW. Instead they then concluded that I worked for the insurance industry, working in tandem with White. At this point I disengaged.
There are people representing (truthfully or otherwise) our community online who make irrational accusations at people. When a journalist writes a story on us and is immediately bombarded by (mostly) rational patients wanting to redress the balance and (unfortunately) a number of people who tell them that they should be 'ashamed' of themselves, that what they have written is 'mindless propaganda', or utter shite or accuse them of being part of some grand conspiracy, which side of the story do you think they'll write next time, if they aren't scared away altogether?
There is a patient on Twitter (he may or may not post on here, I don't know) who has compiled a list of every journalist he considers to have written an inadequate article on ME in the last twenty years so that when the truth outs he can contact every one and make sure they never forget they were complicit in the death and neglect of thousands of patients. I don't think that's a healthy situation, for the patient or our cause. I write freelance in another field when I'm well enough and I wouldn't touch our story with a barge poll if my initial foray into the topic was met with the stuff that some receive.
This battle will be won by research and the spread of information. The best way to spread that information as wide as possible is through the media. So how about we cut some journalists some slack before damning them and scaring them away. It's self defeating. @Viggers explained how this story and the media worked and a little background on the author who is clearly well intentioned. How would you like it if every day you did your job and then the fruits of your labour were dissected and flayed by a large group of folks on the Internet, who then sent you messages telling you how stupid and incapable you are?
I'm new to PR, although I've lurked for a long time. I like it, because largely media and research is evaluated by a large number of very intelligent, knowledgeable people. Criticism is mostly rational and constructive. It strikes me that raving about journos, charities and conspiracies in hyperbolic fashion is probably better saved for Twitter or Facebook or, preferably, just not shared at all.
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I agree, @richio76 - things are starting to go our way and lots of journalists who are new to the topic will start writing about it. We shouldn't flay them when they get it wrong - we should thank them for their interest, point out the errors in a polite and constructive way and get them interested in the story of all this spin.
The spin is, in and of itself, a fascinating story. Any good journalist should be interested in it.
We must have our eyes on the prize, which is good reporting. We won't get there by attacking well-meaning but misinformed journos. We'll get there by helping them fix things.
The spin is, in and of itself, a fascinating story. Any good journalist should be interested in it.
We must have our eyes on the prize, which is good reporting. We won't get there by attacking well-meaning but misinformed journos. We'll get there by helping them fix things.
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Some journalists publish misinformed articles because professionals are misinforming them. I think it is fair that they put some trust in professionals as to be skeptical about every claim simply takes too long.
The problem we need to aim at is those providing the bad narratives (often through the SMC). Take a simple example of the reporting of the long term follow up from PACE. A lot of reports/reporters got it wrong in that they were reporting it said CBT/GET worked better when the trial had a null result. But that is what the press release from oxford university said and also the paper abstract you have to read quite carefully to understand that this claim is wrong. But it should be Oxford university and the lancet we blame for misleading people.
Maybe she believes that "don't attack researchers" equates to "never question bad research"? Has anyone explained the distinction to her, preferably using small words?
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@richio76
I mostly post documents. If you had read some of them you might have grasped how inaccurate, confused, garbled and damaging (to UK ME patients and to the UK Medical Research Council Collaborative on ME, the CMRC, the statements in the article quoted from an OIfficial of the UK Medical Research Council (Stephen Holgate) are.
Have you actually read the CMRC Charter which Stephen Holgate refers to in his interview with Virginia Gewin?
Have you followed the history of the UKCMRC and its inception? Are you aware that three main UK ME Charities refused to join the Collaborative?
Are you aware of the problems with clause 3.2.3 of the Collaborative Charter, which many (including ME chaities) believe consititutes a gagging clause.
At the recent CMRC Conference Sonia Chowdhury (CEO Of Action for ME, CMRC Member and Secretariat, who signed and agreed to the CMRC Charter) refused to ask any question relating to the PACE Trial submitted to her by patients during the webinair, construing any question about PACE as "negative towrds specific research"
I do think that Virginia Gewin should have been less ambitious in the scope of her article, done more background research, and been much more cautious about writing damaging inflammatory fiction about ME patients and certain charities or 'groups' in relation to the CMRC, its spokesperson (Stephen Holgate), Dr Esther Crawley, and UK ME patients. Virginia Gewin ventured into the sphere/style of tabloid journalism with her take on British patients and the UK Collaborative members Stephen Holgate and Dr Esther Crawley. I am sure that if Virginia wishes to be careful of her professional reputation she will do proper research before she puts pen to paper on such delicate subjects. I'm afraid that the excuse of not having time to research everything she wrote about in the article is not acceptable. Virginia repeated defamation against British patients.
We are still trying to establish if Stephen Holgate really did make the statements attributed to him in the article, or if his quoted statements are hyperbole by the journalist.
It may have seemed clever to contrast Leonard Jason's approach with Stephen Holgates approach ..... .Virginia Gewin had already framed ME patients as "Irrational" in her misquoting of Mary Dimmock.. In her treatment of the patients in relation to UK researchers and the CMRC, Virginia has regurgitated some of the worst denigration of UK patients commonly seen in UK media. Or did Professor Stephen Holgate really make those statements to Virginia? In which case there is now a crisis of confidence about the UK CMRC.
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Thats not thoughtful or throrough reporting.
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I mostly post documents. If you had read some of them you might have grasped how inaccurate, confused, garbled and damaging (to UK ME patients and to the UK Medical Research Council Collaborative on ME, the CMRC, the statements in the article quoted from an OIfficial of the UK Medical Research Council (Stephen Holgate) are.
Have you actually read the CMRC Charter which Stephen Holgate refers to in his interview with Virginia Gewin?
Have you followed the history of the UKCMRC and its inception? Are you aware that three main UK ME Charities refused to join the Collaborative?
Are you aware of the problems with clause 3.2.3 of the Collaborative Charter, which many (including ME chaities) believe consititutes a gagging clause.
At the recent CMRC Conference Sonia Chowdhury (CEO Of Action for ME, CMRC Member and Secretariat, who signed and agreed to the CMRC Charter) refused to ask any question relating to the PACE Trial submitted to her by patients during the webinair, construing any question about PACE as "negative towrds specific research"
I do think that Virginia Gewin should have been less ambitious in the scope of her article, done more background research, and been much more cautious about writing damaging inflammatory fiction about ME patients and certain charities or 'groups' in relation to the CMRC, its spokesperson (Stephen Holgate), Dr Esther Crawley, and UK ME patients. Virginia Gewin ventured into the sphere/style of tabloid journalism with her take on British patients and the UK Collaborative members Stephen Holgate and Dr Esther Crawley. I am sure that if Virginia wishes to be careful of her professional reputation she will do proper research before she puts pen to paper on such delicate subjects. I'm afraid that the excuse of not having time to research everything she wrote about in the article is not acceptable. Virginia repeated defamation against British patients.
We are still trying to establish if Stephen Holgate really did make the statements attributed to him in the article, or if his quoted statements are hyperbole by the journalist.
It may have seemed clever to contrast Leonard Jason's approach with Stephen Holgates approach ..... .Virginia Gewin had already framed ME patients as "Irrational" in her misquoting of Mary Dimmock.. In her treatment of the patients in relation to UK researchers and the CMRC, Virginia has regurgitated some of the worst denigration of UK patients commonly seen in UK media. Or did Professor Stephen Holgate really make those statements to Virginia? In which case there is now a crisis of confidence about the UK CMRC.
.
.
Thats not thoughtful or throrough reporting.
.
.
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RustyJ
Contaminated Cell Line 'RustyJ'
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I don't condone harrassing researchers, nor do I believe we should stop asking questions, even when things appear to be going in our favor. To stop asking questions is to ignore history in our illness.
In response to the above quote, I would point out that @viggster knew nothing of the SMC control of all me/cfs media stories nor of Welcome Trust's history of involvement in discrediting biomedical research into me/cfs.
Further, apparently all he knew about the author he later said he got from the Mozaic site, so discussion about whether or not Virginia was well-intentioned is speculation only, not "clearly".
BTW, and this is a theme in many posts in this thread, that Virginia just got a quote wrong. Getting a quote wrong is not all that Virginia did, she actually got a whole interview wrong. As Mary said, other parts of her discussion with Virginia should have made it clear on which side of the issue she stood. So when anyone dismisses Virginia's incorrect quote (it plays a key role in setting up the structure of the article by bridging between patients and researchers etc) they really are making light of the issue.
If you accept that the error was serious, you have to reassess intent. I am not saying she intended to paint Mary in a bad light, just that the question must be asked and not dismissed as inconsequential.
The argument that if we educate Virginia she will be on our side is somewhat mute as Mozaic/Welcome/
Gizmodo would not publish that sort of article, so the chances of her having opportunity to redress on such a large-scale are vanishingly small.
Here is the narrative of the article: Jason (Jason is no-one of note, among UK researchers, or the public) says the illness is serious (big deal, no-one cares that much about ME or CFS) but Jason also says patients can be fractious, because he sees both sides of the issue (so Jason is a good guy, yet even he thinks patients are unruly). The artifice here is to build up Jason, not to show how serious the illness is. The more Jason is built up, the more seriously the reader will take his claims about unruly patients.
Then we go to Mary Dimmock who is even a patient who thinks patients are unruly. Then, we shift to other UK exhortations from the poor guys at the workface, the researchers, who have bent over backwards for patients to develop the CMRC which is really making progress on solving this disease.
It's a pretty standard public relations strategy. It works on building up the voice (Jason) who then plays a key role in tearing us down. I certainly don't see it as a tale of two halves. The first half only seems good for us, but it works to make the second half better.
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Bob
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I'd like to suggest that we get a bit more constructive in this thread. We all agree that the article was upsetting and the balance wasn't right. But we also know that the reporter was new to the subject, and a friend of patients, and potentially a good friend to the community. We know, from past experience, that well intentioned journalists often don't get the balance right when first writing about the subject but can later become allies. (I can think of an example but I can't remember the name of the journalist.) It may well be the case that the journalist trusted sources that we wouldn't trust. But who would know that those sources were so utterly unbalanced and untrustworthy? Let's see this as a learning process. If we want journalists to be on our side, then we need to befriend them, and to gently nurture them, and to encourage them. It might not always work, but this journalist is already sympathetic, and could be a very powerful ally. I propose that we judge her on her second article about the subject, not the first, and gently encourage her in the mean time, as we would encourage a friend who was aiming to help us.
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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On the subject of Action for M.E. I suggest you look at this thread:
http://forums.phoenixrising.me/inde...-for-company-peddling-ancestor-healing.41194/
http://forums.phoenixrising.me/inde...ompany-peddling-ancestor-healing.41194/page-2
Which is currently being raised with AfME's CEO.
So much for Julia Newton.
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Action for ME staff may have admitted privately to @richio76 some 'mistakes' by AFME in the past. In the present AFME recently invited a person to be their Ambassador, who claimed to have recovered from ME by doing Reverse Therapy psychotherapy. Another AFME Ambassador is currently used by Phil Parker to advertise Lightning Process.
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Like I said, I don't agree with everything they do.
AfME's overriding attitude currently seems to be and has been for some time that as an umbrella diagnosis many different things will help many different people, but that they find that a majority of their members prefer pacing and find Cbt and GET as at best useless and at worst damaging. They therefore keep an open mind. If I had to criticise I'd say that they are sometimes very naive, and this is clearly misguided.
Jonathan Edwards
"Gibberish"
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Dear Bob,
I agree with being constructive and I am personally sure that Virginia Gewin made a lot of supportive and reasonable remarks.
However.
I used to think that the bit I quote of you in italics might sometimes be realistic. But over the years I learned what everybody learns after dealing with journalists regularly. They are never friends or on your side in their professional capacity. Even the ones who were friends in a previous life are now professionals selling stories. That is their job. Mutual respect comes when both the journalist and the person providing information are totally clear about this. It means that the journalist can decide for herself what she wants to write with no strings - as it should be. We do not want 'friends'. That is what the others may do. Some journalists are providing the ME community with a lot of support at present. The ones that we can tell are doing that because it suits their agenda are the ones we can hope to do business with again.
And since a journallist can shaft whoever they like with no notice whenever they like I personally do not think anybody should be soft on them. If they do not get to the bottom of the common sense reality of a story then they need to try harder. What I think may be interesting about social media is that the journalist is no longer able to muddle things up and have no public come back. The public can get attention just like the journalists now. It is looking much fairer to me. And everyone should just stick to what they feel they want to say.
That does not stop people trying to persuade journalists what is important in a direct but polite fashion.
I think this exactly. If we feel a journalist is misinformed then inform them. And in the case of Isabel Hardman for example, I know that Bob and a great many others tried to do just that.
Roy S
former DC ME/CFS lobbyist
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And now for a brief comedic relief brought to you by CoyneoftheRealm...
https://mobile.twitter.com/CoyneoftheRealm/status/665125621882859520/photo/1
https://mobile.twitter.com/CoyneoftheRealm/status/665125621882859520/photo/1
RustyJ
Contaminated Cell Line 'RustyJ'
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Bob
Senior Member
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@Jonathan Edwards, OK, fair point that we shouldn't expect most journalists to be our friends. That would be naive. But we do have some journalists who are very sympathetic, supportive and friendly towards the community. They often either have ME themselves or they know someone with ME. So we can expect a sympathetic hearing from some journalists. For other (disinterested) journalists, we will need to continue to spend time educating them. I wasn't satisfied with the ultimate outcome of the Isabel Hardman article in the Spectator, but I did have a constructive interaction with her, and she did seem to genuinely want to be fair and balanced. (But clearly failed from the point of view of the community.) I think she was upset by the reaction to the article because she genuinely thought she was being helpful. (I'm not sure how she thought she was being helpful, but she did.) I think her willingness to be helpful was demonstrated by her adding a PPS to the article that reflected the feedback she'd received from patients after publication. Anyway, my point is, perhaps that is the sort of journalist who may respond positively to firm but patient and gentle nurturing, rather than immediate hostility and suspicion. Other journalists are never going to listen to anything we say. And I think it would be helpful for us to be able to identify journalists who are willing to listen and who may potentially modify their output, and treat them kindly.
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RustyJ
Contaminated Cell Line 'RustyJ'
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This is a harsh reality. However I am not sure that either of the two journos involved in this thread fall within this description. It would have been nice to have a few questions answered though to resolve any doubts. And it is regrettable that some try to close down such questioning.
Another reality which is more apparent these days is conformity to culture within a publication. Only those with a culture that extends from the top get promotions, so the culture pervades and perpetuates. In this environment, journos may still believe what they are writing (this is not necessary), however they have usually been groomed or biased by the culture. So they are trained to accept the view of establishment ie researchers over patients etc. I'm afraid this has already happened with respect to me/cfs.
More clearly this is illustrated by the entrenched conservatism of Murdoch run media, not just newspapers but television, internet, where unashamedly political viewpoints color just about every article.
Bob
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And right on cue, to support my ramblings, this is from Isabel Hardman...
New Article in the Spectator.
ME isn’t just ‘exercise phobia’: it’s a physical illness
Tanya Marlow
http://blogs.new.spectator.co.uk/2015/11/rod-liddle-knows-nothing-about-me/
https://twitter.com/IsabelHardman/status/665187708378198016Isabel Hardman said:
New Article in the Spectator.
ME isn’t just ‘exercise phobia’: it’s a physical illness
Tanya Marlow
http://blogs.new.spectator.co.uk/2015/11/rod-liddle-knows-nothing-about-me/
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