Front Page BBC article about CFS?? (ME)

[Wonko]

I'm sorry you feel that way Bob, whilst the news was not unexpected, it's not good news for pwME (apart from the whole possibly not having a pesky little retrovirus thingy).

Whilst I can appreciate the point of view of those who consider the current news stories as better than they might of been, possibly because of the BWG results and their likely consequences, I dont seem to be quite as capable of just gazing in stunned incomprehension, and then forgetting about it, goldfish like, as normal.

So my analogy may have been a little blunt, but as I said above it wasnt intended as a critism of anyone elses point of view, it was only meant to be a reflection of mine.

In general I quite like your posts and whilst I dont always agree with them I do find them informative and sometimes amusing (hopefully only when you've intended them to be LOL).

I had no idea you consided it your mission to reply, comment on, break down or officially complain about all news articles on my/our/pwME's behalf (which may indicate a lack of attention on my part) but I am fairly sure that attempting to do so is asking an unreasonable amount from yourself.

 

[currer]

I dont think people should feel depressed about the BWG developments.

This is extremely difficult science. In any other age a researcher could spend a lifetime investigating these findings before they were considered expert.
Nowadays for some reason, we expect to understand and be provided with answers instantly.

This isnt a pop-up toaster. Its really difficult science. There will be twists and turns.
I think some people may be getting depressed because they do not comprehend how complex this subject is. (Not Bob, of course)

My real concern through all this was that the science would be prematurely curtailed. As long as it isnt, I expect valuable results from all the retrovirology. I'm optimistic.

PS I dont look for trends in the reporting. I think the tone used about us is most probably random.

Bob does a lot of work on these threads especially with the research papers.
But, Bob you shouldnt think we expect you to analyse everything for us. That is too much for one person.

I, too was just expressing my personal reaction.
Go and sit in the sunshine, Bob.

 

[Bob]

Thanks for the feedback and the nice comments Wonko and currer.
Usually I can emotionally detach myself from the XMRV developments, and view the science for what it is... but I'm having an unexpected emotional reaction this weekend. But I suppose it's only to be expected sometimes.
Anyway, it will soon pass... And there's lots of other positive stuff coming from the conference.
No, I don't expect myself to analyse all of the articles etc... I was just responding to some of the critical comments which I know weren't directed at me personally, but I wrongly took personally because I was feeling a bit low when I read them.

 

[Esther12]

Be good to yourself Bob. These things can knock one back in surprising ways.

I'd recommend a getting under a duvet with some chocolate and 'The Mighty Boosh' (eg: http://www.youtube.com/watch?v=sB3LRCs0IHM) - but I expect you have your own preferences.

 

[Navid]

bob


just a fellow commiserater (Sp). i feel bad abt the bwg-xmrv stuff too. many of us had our hopes tied to treatments coming down the road quickly!!!!!....from many of the things being done and said at the ottawa conference this still may be true ad the good news is we rob don't have a RV, which is very good news.....lets just get some new treatments going that's the art that bummed me out....2 years of waiting, waiting, waiting and poof that line of possibility in terms of xmrv looks to be gone. i think it's ok to take some time to grieve that loss of a possibility.

don't leave the forum. you are one of the most interesting posters here.

hugs from a fellow depressed sufferer....our day will come we will find the way!!!!!

 

[Yungas]

I'm sorry if anyone feels I was critising them, that wasnt my intention and in fact it never enetered my head that anyone would think that.

I was simply stating my surprise that some people viewed the article as good news, thats all.

When I read the article several statements felt "off" I was wondering if you could go into more specific detail with what was wrong with the article to help me with my generalized musings

 

[Wonko]

When I read the article several statements felt "off" I was wondering if you could go into more specific detail with what was wrong with the article to help me with my generalized musings

sorry but I'm not up to a complete point by point breakdown at the moment but here's a couple of examples.

1. Holgates comments on PACE may be "accurate" in a literal sense but are highly misleading, given that people AFTER the trial would still be categorised as severely physically disabled, but it (CBT and GET) is being painted as having "undoubted benefit", this may be true but only to the bank balances of practitioners. So no actual "inaccuracies" but designed to give a totally false impression.

2. PACE trial again, their version of adaptive pacing bears no real relation to that used , or recommended for, pwME, but it's used to discredit pacing as used by pwME. So accurate for a given value of accurate but totally misleading and a bald self serving lie.

3. Crawleys comment about adults with ME having their chances of recovery damaged/reduced by "the adult lifestyle being predicated against recovery" can and will be interpreted as meaning it's our own fault we dont get better, if we lived a purer, better, more healthy life then we would get better. Most of the most severely affected dont live an adult lifestyle, we dont drink, smoke, work etc because we cant. A lot of us have extremely healthy diets when compared with the general population etc. So her statement is deliberately designed to increase predjudice whilst having no actual basis in fact. But very difficult to disprove on a general basis and something that basic human psychology makes it easy to accept.

There is lots more, including the whole tone of the article, not to mention both the original and the now changed picture (hardly much of an improvement), but as i said I'm not upto a complete point by point breakdown ATM.

 

[Yungas]

sorry but I'm not up to a complete point by point breakdown at the moment but here's a couple of examples.

1. Holgates comments on PACE may be "accurate" in a literal sense but are highly misleading, given that people AFTER the trial would still be categorised as severely physically disabled, but it (CBT and GET) is being painted as having "undoubted benefit", this may be true but only to the bank balances of practitioners. So no actual "inaccuracies" but designed to give a totally false impression.

2. PACE trial again, their version of adaptive pacing bears no real relation to that used , or recommended for, pwME, but it's used to discredit pacing as used by pwME. So accurate for a given value of accurate but totally misleading and a bald self serving lie.

3. Crawleys comment about adults with ME having their chances of recovery damaged/reduced by "the adult lifestyle being predicated against recovery" can and will be interpreted as meaning it's our own fault we dont get better, if we lived a purer, better, more healthy life then we would get better. Most of the most severely affected dont live an adult lifestyle, we dont drink, smoke, work etc because we cant. A lot of us have extremely healthy diets when compared with the general population etc. So her statement is deliberately designed to increase predjudice whilst having no actual basis in fact. But very difficult to disprove on a general basis and something that basic human psychology makes it easy to accept.

There is lots more, including the whole tone of the article, not to mention both the original and the now changed picture (hardly much of an improvement), but as i said I'm not upto a complete point by point breakdown ATM.

Yes I agree with all of that, cheers.
On a similar note I find the suggestion that cognitive therapy improves m.e VERY annoying.

1. Because it suggests m.e is psychosomatic, you have to be pretty ignorant to believe the way you think is gonna change an illness like this!

2. Its flippin ignorant for them to believe They can tell you a better way to think and percieve, like were some dummies with no control over our own minds, these quacks need to get a grip on reality.

Before I had m.e back in school I had counseling for bad behavior they put me in this room with this real slow woman who asked me a bunch of questions and offered zero insight into my problems,
it really confused me how the hell this was supposed to help.
After a while I began running out of things to say and became uncomfortable giving her so much information, she asked if the counseling was helping I said no and they stopped the sessions.

This is an example of psycho bullshit and this approach is very handy for the powers that be to really fuck a group of people and say its just in their minds.

Its a technique pioneered by nazis, after WWII the surviving top nazi scientists were taken to the USA in a CIA operation called "paperclip" (look it up), they were placed in top ranks as rocket scientists and psychologists

 

[Roy S]

It stated-Dr Ester Crawley, who specialises in children with the illness, said: "The prognosis for adults is poor, but for children it is really good, up to 94% get better."

How much better does she think they get, and how can The Lightning Process be accurately tested if 94% get better? (which I doubt)

At least it didn't mention death threats until the third sentence. So there is that. And Wessely isn't featured. Yes, that was sarcasm.