BMJ b/s painting PWME as threatening psych patients

[Sam Carter]

... I really don't see how their conclusions can be supported especially when they don't have ANY alternative explanations for ME....

They would argue that their conclusions and beliefs are supported by their published work and that challenging a particular pathoaetiologic hypothesis does not obligate them to produce an alternative.

 

[floydguy]

To argue that though, surely you should think that Mikovits should be equally condemned for suggesting that ARVs should be tried. Different researchers can disagree about the state of the current evidence, and whether it is reasonable to try using ARVs for CFS - I don't have a problem with that, but I do think that some of the criticism of Singh, Huber, Coffin, Kerr, etc has been unfair.

You make it sound like Mikovits has suggested that anyone who might have ME/CFS should run out and get ARVs as soon as possible. I don't recall her making such statements. You are jumping on the bandwagon of the ridiculous straw man. There's a huge difference between taking ARVs after much consideration under the supervision of a trusted and knowledgable doctor and running out and taking ARVs just for the hell of it. Why should I condemn anyone who wants to keep my options open? I'll only condemn Mikovits or others if they suggest that everyone should start taking them ASAP.

The proof in the pudding for Singh is if she continues legitimate research into ME/CFS. If she doesn't, then I think she probably does deserve some criticism. Actions speak louder than words.

 

[Esther12]

I think people can fall into the trap of always criticising from the sidelines. I recall IVI criticised the tone of letters in reply to the Lancet - see, for example, second comment under: http://www.meassociation.org.uk/?p=6181 , when the tone of the letters and in particular the tone of the letters that were published was quite measured. If he feels he can do better, I would suggest he leads by example at least some of the time. I have more respect for people who at least sometimes "do" - I'm guessing this is the sort of point Bob had in mind. You learn by doing incl. you also can get a better insight into why some people might do things a certain way (and can get an idea whether there might be a better way or not).

I agree with all this... but also think that there are benefits to having outside criticism. Genuinely engaging with a lot of the poor CFS research about is rather galling, and can skew one's own perspective. It's hard not to get absorbed in one's own frustration and righteous rage, and remember that it's important to present our arguments in a way that is convincing to the undecided middle-ground. (I think you're better at this than I... I'm starting to get twitchy about it all).

And just sniping from the sidelines is a lot easier and more fun! Not all of us have your dedication.

 

[Esther12]

You make it sound like Mikovits has suggested that anyone who might have ME/CFS should run out and get ARVs as soon as possible. I don't recall her making such statements.

I didn't say that, and I didn't mean to suggest it.

You are jumping on the bandwagon of the ridiculous straw man. There's a huge difference between taking ARVs after much consideration under the supervision of a trusted and knowledgable doctor and running out and taking ARVs just for the hell of it. Why should I condemn anyone who wants to keep my options open? I'll only condemn Mikovits or others if they suggest that everyone should start taking them ASAP.

Surely this is just a debate over whether XMRV is likely to be related to CFS? Mikovits clearly believes it is, and thinks that patients who tested positive should be discussing ARV's with their doctors, while Singh (and others) think that the positive test results are in error, and that clincial decisions should not be taken based upon the presumption of their accuracy.

The proof in the pudding for Singh is if she continues legitimate research into ME/CFS. If she doesn't, then I think she probably does deserve some criticism. Actions speak louder than words.

I don't think that Singh would deserve criticism if she chose not to do more CFS research (at least, no more than any other researcher who is not working on CFS... we should be their priority!!)

 

[floydguy]

They would argue that their conclusions and beliefs are supported by their published work and that challenging a particular pathoaetiologic hypothesis does not obligate them to produce an alternative.

They can say that but people don't have to agree with their ridiculous conclusions or the inferences they've made from their data. If they don't want to continue to research ME/CFS, then they are wasting time and money. They aren't committed to solving the problem. Those people should move along and do something else.

 

[floydguy]

Surely this is just a debate over whether XMRV is likely to be related to CFS? Mikovits clearly believes it is, and thinks that patients who tested positive should be discussing ARV's with their doctors, while Singh (and others) think that the positive test results are in error, and that clincial decisions should not be taken based upon the presumption of their accuracy.

I disagree I think this is a debate over a decision that should be made between a doctor and a patient after much thought and discussion. I also think it goes further than XMRV and is effectively a debate over whether you think there is a viral cause or not. I believe that many who are saying that ARVs shouldn't be taken say this because they don't believe in a viral cause of CFS.

 

[Dolphin]

I think people can fall into the trap of always criticising from the sidelines. I recall IVI criticised the tone of letters in reply to the Lancet - see, for example, second comment under: http://www.meassociation.org.uk/?p=6181 , when the tone of the letters and in particular the tone of the letters that were published was quite measured. If he feels he can do better, I would suggest he leads by example at least some of the time. I have more respect for people who at least sometimes "do" - I'm guessing this is the sort of point Bob had in mind. You learn by doing incl. you also can get a better insight into why some people might do things a certain way (and can get an idea whether there might be a better way or not).

I agree with all this... but also think that there are benefits to having outside criticism. Genuinely engaging with a lot of the poor CFS research about is rather galling, and can skew one's own perspective. It's hard not to get absorbed in one's own frustration and righteous rage, and remember that it's important to present our arguments in a way that is convincing to the undecided middle-ground. (I think you're better at this than I... I'm starting to get twitchy about it all).

And just sniping from the sidelines is a lot easier and more fun! Not all of us have your dedication.

Thanks.

Outside criticism can have a value certainly. But a tone of respect is also useful - which often mean a mixture of praise and criticism rather than simply criticism or at least acknowledging where the person being criticised might be coming from, etc.

Also, some people sitting on the sidelines can have more time on their hands so critical posts can have the potential take a long time to reply to.

Anyway, I can probably cope with IVI's posts more than some people's (I find some emotional posts from other people, on various forums I've been on over the years, tiring - I'm not so good with stress following the illness) and do sometimes think he makes interesting observations.

 

[Sam Carter]

They can say that but people don't have to agree with their ridiculous conclusions or the inferences they've made from their data.

The editor of Science agrees with them. Their conclusions may be wrong, but they aren't ridiculous.

If they don't want to continue to research ME/CFS, then they are wasting time and money. They aren't committed to solving the problem. Those people should move along and do something else.

Coffin was recruited to the cause in the first instance because he is a world authority on murine retroviruses. I fully expect him to move along and do something else -- why would he want to engage with a field that has brought him vicious and misplaced criticism?

Huber will stick with her HERV-K research and does seem committed to finding answers. Just not the answers some people want.

Remember, if the WPI can accurately discriminate between patients and controls in Lipkin's study the game's back on; if they can't, it's over.

 

[Esther12]

I disagree I think this is a debate over a decision that should be made between a doctor and a patient after much thought and discussion. I also think it goes further than XMRV and is effectively a debate over whether you think there is a viral cause or not. I believe that many who are saying that ARVs shouldn't be taken say this because they don't believe in a viral cause of CFS.

I don't think that's the case. Different drugs are needed for different viruses. Just chucking things at it when you don't know what's going on, or have an objective test for viral load etc, could do more harm than good and end up breeding drug resistant strains.

 

[Esther12]

Thanks.

...But a tone of respect is also useful - which often mean a mixture of praise and criticism rather than simply criticism or at least acknowledging where the person being criticised might be coming from, etc.

No probs. I think there's now something of an in-house style for the internet - signs of mutual respect don't seem to be a part of it!

I can end up looking back at posts I made the day before and think they seem more hostile than I had meant to be... it's easy to just unleash ones thoughts when writing to a computer. (It quite suits me - I've never been known for my charming pleasantries).

 

[Dolphin]

Thanks.

...But a tone of respect is also useful - which often mean a mixture of praise and criticism rather than simply criticism or at least acknowledging where the person being criticised might be coming from, etc.

No probs. I think there's now something of an in-house style for the internet - signs of mutual respect don't seem to be a part of it!

I can end up looking back at posts I made the day before and think they seem more hostile than I had meant to be... it's easy to just unleash ones thoughts when writing to a computer. (It quite suits me - I've never been known for my charming pleasantries).

Ok. I think I have become a bit less conscious of this myself over the 15 years I've been on ME/CFS internet lists so not holding myself up as any sort of saint. At this stage, I might not mind too much any individual post not showing signs of mutual respect or whatever, but when the numbers start adding up (i.e. there are lots of similar posts), I think that is when it can be more of a potential problem.

 

[Snow Leopard]

I think we need a journalist to hit back and interview veteran researchers to see what they perceive as the difficulties limiting CFS research funding and their careers.

Eg
Scientists such as Dr Jason, Dr DeMeirlier, Dr Natelson, Dr Kerr, Dr Komaroff, Dr Chia, Dr Broderick, Dr Maes etc. MDs such as Dr Peterson, Dr Kimas etc. Reserchers recently entering the field, such as Dr Brenu as well as veteran scientists that are becoming interested in research into CFS: Dr Lipkin, Dr Alter etc.

Mention the lack of research in CFS compared to other diseases when comparing societal economic costs, levels of disability. The fact that other diseases have also failed to find specific biomarkers, for example Crohn's disease
which currently receives over 10 times the amount of funding!

With intention to publish in the BMJ, (or WSJ etc).

 

[WillowJ]

I think we need a journalist to hit back and interview veteran researchers to see what they perceive as the difficulties limiting CFS research funding and their careers.

Eg
Scientists such as Dr Jason, Dr DeMeirlier, Dr Natelson, Dr Kerr, Dr Komaroff, Dr Chia, Dr Broderick, Dr Maes etc. MDs such as Dr Peterson, Dr Kimas etc. Reserchers recently entering the field, such as Dr Brenu as well as veteran scientists that are becoming interested in research into CFS: Dr Lipkin, Dr Alter etc.

Mention the lack of research in CFS compared to other diseases when comparing societal economic costs, levels of disability. The fact that other diseases have also failed to find specific biomarkers, for example Crohn's disease
which currently receives over 10 times the amount of funding!

With intention to publish in the BMJ, (or WSJ etc).

applause!

yes, that would be a great approach

 

[orion]

Wow. It's astonishing that a supposedly scientific journal can publish such a biased and imflammatory piece. What on earth were they trying to achieve?

However, now my anger has subsided I'm beginning to think that Nigel Hawkes might actually have done us a huge favour. In my opinion, an over the top rant like this benefits our cause far more than any number of disingenuous articles pretending to be reasonable and sympathetic towards patients but still claiming that CBT and GET are the only effective treatments available. It unwittingly reveals the true nature of the people we're dealing with.

I'm reminded of a quote attributed to Gandhi - "First they ignore you, then they ridicule you, then they fight you, then you win."

At least we're no longer being ignored or ridiculed. I see that as progress.

 

[Bob]

I'm reminded of a quote attributed to Gandhi - "First they ignore you, then they ridicule you, then they fight you, then you win."

At least we're no longer being ignored or ridiculed. I see that as progress.

Yes, that's sort of how I see it as well.

I think the BMJ articles show that the medical establishment cannot ignore us any more...
Even the negative comments in the articles allow us to answer back, and forces the BMJ to engage with us.
I think that ME patient community's advocacy work has finally forced them to take notice of us.

 

[ukxmrv]

The problem is that they have been "taking us seriously for a long time" and attacking us for a long time. It's not the first report of Wessely whinging about how the patients treat him.

I don't think that the BMJ was a positive thing at all. We already have enough evidence of how much they hate us to make 10 versions of "and the band played on".

It was just hate and that's gone on for a long time now.

We don't know if we will ever "win" and if/when we will, how many people here will be alive to see it?

 

[SilverbladeTE]

I call a scumbag, a scumbag, and if they doesn't like it, they can go screw themselves with a propellor!

sorry to hark back to this point but it's basic: if someone abuses an innocent party, if someone is a rotten son of a bitch etc, then they DESERVE the ire and ranitng of their victims
What, we're supposed to be all meek and nice about the terrible things that have bene done to us?
Um, HELL FAKKIN' NO!!
Scum are scum, whether they use a scalpel, bureacratic jiggery-pokery, an AK-47, pay offs, car bombs or whatever, they're all evil, life-ruining sons of bitches.
We are all not Ghandi. Going around like we are won't solve anything. As said before, not one thing we do will change the massive cover up and genocide against us, until that certain "tipping point" occurs, be it a catastrophic outbreak, famous person, or whistle blower or even just such a building mass of evdience/events it buries the liars under it.

 

[alex3619]

sorry to hark back to this point but it's basic: if someone abuses an innocent party, if someone is a rotten son of a bitch etc, then they DESERVE the ire and ranitng of their victims

What, we're supposed to be all meek and nice about the terrible things that have bene done to us?

As said before, not one thing we do will change the massive cover up and genocide against us, until that certain "tipping point" occurs, be it a catastrophic outbreak, famous person, or whistle blower or even just such a building mass of evdience/events it buries the liars under it.

Hi SilverbladeTE, I both agree and disagree with what you said here. One of the great problems with ME and CFS is we are so sick and disempowered that we have been silent too long.

I don't think that inflammatory rhetoric ever does much good, the people involved just don't care, and it makes us sound crazy. However, focussed valid criticisms of the type the advocacy has been doing on the PACE trial is hurting them. They can't refute what we say, so they attack us instead - blaming the victim for their abuse.

I think there are three likely outcomes: science makes a breakthrough that cannot be ignored and steamrollers them, a disaster occurs that frightens the world, or we force change step by step, never giving ground. There is also a small chance that someone will step forward and reveal what is happening behind the scenes, but I wouldn't count on it: it should have happened already.

ME and CFS might well have a partially genetic basis that puts a limit on how bad an epidemic can get, but there is a chance this is simply not so, that genetics merely increase susceptibility. A major global pandemic of the wrong kind could easily lead to catastrophe with hundreds of millions collapsing never to be able to function again. This is very low probability, it has not happened so far, but it is something I do not wish to ever see happen. To stop a chance of this outcome we have to keep backing the science (not the babble) and keep up advocacy.

As far as speaking out is concerned, it is my view that civil but determined advocacy is not just our right, its our duty as people who see what a disaster this is to society. It is our civic responsibility to fight the abuse and ignorance.

Bye
Alex

 

[Mark]

I agree with Alex (and so I too agree and disagree with Silverblade ).

Our anger and our well-founded sense of injustice are just inevitable, nobody can wish that away, and we should feel that way, we should not let ourselves be devalued by passively accepting our fate. Anger, focused properly, can be and is a positive emotion. But it has to be focused, it has to be expressed in an effective way. 'Temper tantrums' are entirely natural, understandable and forgiveable - but they are also counter-productive, and they are just a beginning as we rediscover our humanity: we all have to strive to use our anger as an effective energy by controlling it and letting it drive actions that achieve positive results. And yes, it isn't easy...

But as this thread (and other recent events) highlights, those who wish to keep the realities of ME/CFS hidden from view will automatically grab any opportunity to paint us as an angry mob of crazy and unreasonable people. It's like a reflex for them, and it's obviously an effective strategy in undermining us.

"...if someone abuses an innocent party, if someone is a rotten son of a bitch etc" then they [STRIKE]DESERVE[/STRIKE] ENJOY the ire and ranting of their victims".

The more we can show that the people who misrepresent us are the unreasonable ones, the clearer our case will be.

But where I agree with Silverblade is, first you've got to get mad - you've got to say: I'm a human being goddammit, my life has value!

http://www.youtube.com/watch?v=5tBnhe8ciCw

 

[Bob]

Personally, I think that making our voices heard is essential, however we go about it.
But, I think that focusing our anger into sustained and constructive action is most helpful.
But, also, we are all human, and I think it is helpful to give ourselves plenty of time out from negative emotions as well, and to nurture positive emotions for our own sakes.
Maybe sustained negative emotion can eat up a person's humanity as much as the illness does.

(I'm just philosophising, so please ignore if unhelpful!)