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CFS etc over on Bad Science

Discussion in 'Action Alerts and Advocacy' started by Angela Kennedy, Apr 23, 2010.

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  1. rosamary

    rosamary

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    I understand. It is sad isn't it. That robbins 'guy' seemed sincere. Then we get all this rubbish. There was so much, if he was sincere, that he could have found out. Still, I guess it would be too much to hope for as he had come from that place.

    Maybe next time. Fingers crossed.
  2. natsci

    natsci Guest

    It seems we are not welcome here. Quite how a community is going to spread it's message when people who aren't either sufferers of advocates are allowed to join in the debate, I don't know.

    Just a parting thought, and this isn't meant to be snarky or patronising. Perhaps you need to consider the audience you are targeting. Whilst we may not be the people with the power to change the NHS and NICE, we are indicative of the type of people who are: highly analytical, logical and (generally) intelligent. Whilst some of the comments on both forums (fora?) would certainly not be part of a discussion, if anything could we not be seen as people to practise your arguments on? We are good people at heart, and just as we have to try to see things from your point of view, you have to try to see things from ours as well. It appears none of us have been particularly successful at that last point, perhaps something for both parties to work on in the future.

    Wishing you all the very best for the future.
  3. Seconded. There seems to be a huge amount of confusion over me/cfs which is causing an equally huge amount of upset and suffering.
  4. Angela Kennedy

    Angela Kennedy *****

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    Mike aka monk,

    Would you mind telling the dudes over there that I WAS joking when referring to the cats? Well - no - the putting of the cats up was pretty stupid and annoying, and indicative of dysfunctional argument modus operandi. But I was actually being jokey in my comments on here, with reference to the cats.

    Only some of your mates seem to think I'm some nutjob whose enjoyment of cats was genuinely ruined. And they're apparently laughing at me - not at my wittiness!

    But I was joking, honest! I didn't do an 'lol' in case it was miscontrued as 'lots of love', see?

    Also- I'm actually a dog person. Well, more of one, if you like.

    Also - outrage over the correction of the spelling of Ean Proctor.

    Esther12, your comments are causing outrage too.

    I report these only to point out the futility of engaging with BS, to be honest. Misunderstanding is the order of the day.

    Natsci

    - your forum is NOT the repository of 'highly analytical, logical and (generally) intelligent' individuals you claim. That's the problem!

    They don't even get jokes!!!
  5. Knackered

    Knackered Guest

    The debate? What debate? The only debate I've seen over at BS is why people with CFS don't want to admit they have a mental health issue. I don't think you're currently worthy of anyone's time and effort regarding CFS.

    Too late, I don't like your tone and you do seem patronising, there are some very intelligent and accomplised people on this board and they don't need speaking down to by the likes of conceited young university students such as yourself.
  6. Of course Angela

    I will quote your post in full!

    Nobody ever recognises my jokes and I know how hurtful that can be:ashamed:
  7. _Kim_

    _Kim_ Guest

    Meddling Lurkers Entice Emotions.
    Venom Unleashed, Knowing Censorship Is Possible, Our Response To Engagement Now Is:
    Unless Sincere Restraint Is Maintained, Invective and Unpropitious Rhetoric Overcome Nearly Everyone
  8. jimm

    jimm

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    hi badsciencemonk, I would be interested to know what you are trying to find out? please give me a couple of questions please, so I can get the gist. Secondly the original poster (the fellow from the guardian) seems to have gone quiet....does he have any more to comment?
    I hope you can understand the reticence and slight suspicion when suddenly a rash of new people just turn up from the badscience board, especially becuase certain memebers of the bad science board, are not rational, logical people sadly.
    Also I am naturally skeptical about things and like to get a handle of all the facts on any given subject, I like "real" science too, but this is exactly WHY I dont use the bad science board, becuase sadly even though the forum may have good intentions there seems a lot of double standards on there, and a lot of jeering. Also there seems to be a large herd mentality on the board where there is a certain way of behaving and a large amount of looking down your nose/knee jerk flaming etc. It reminds me of the type of people who like to feel superior and outraged about things becuase it makes them feel more intelligent. I am not accusing anyone in particular of this but this is the general feel I get from the bad science forum. This may not be the intention of the forum but thats the impression I get whenever I have been on the board in the past.
    regards jimm
  9. I can certainly see why you would think that. The different threads vary a lot in how much humour, invective or relevance to science or common sense is used. Two threads on the same subject separated by time can have a toally different tone!

    I have not got specific questions at the moment - it is more just trying to get an overview. I am not a doctor or a scientist and I am not a patient or an advocate for CFS. I am just trying to get the lay of the land really and the problems you cite have made it really difficult to see the wheat for the chafe on badscience. Right now I do not have much of an opinion on anything but I have been annoyed by individual posters on both sides of the argument on badscience polarising the situation

    I am using somebody elses computer so I keep logging on and off. Sorry!
  10. Robin

    Robin Guest

    @natsci, if you read back a lot of people were willing to engage with the original BS person, until links to his other online posting made it obvious that he was being disingenuous -- I was one of them. Any inquiry will not get a uniform response, so please don't resort to "you people" type of the thinking. We're about as homogeneous as a group of gay men. (If you're ever hung out with gay men you will get the joke!)

    And, thanks for the offer being a sounding board/verbal sparring partner. Unfortunately, I doubt any change in regards to thinking about ME/CFS in the UK will originate from the patient community, though they've certainly been trying for a long time. It will most likely come from published research, probably done elsewhere. If you're truly interested about learning keep an eye on pubmed. There are a lot of studies coming out and it will give you a broader understanding of the clinical picture.
  11. jimm

    jimm

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    if you are genuninely interested, then I can suggest a few things to look into, perhaps a good place to start would be , Dr Klimas who has been working on the illness for many years, she studies 2 illnesses HIV and ME/CFS, she is on record saying that if he HAD to have one, she would choose HIV (please note she is referring to HIV not late stage AIDS) she is considered an expert in the immunological aspects of the illness.

    Also you may be interested in professor Newtons work on autonomic dysfunction problems and PH anomalies in the muscle.

    These are 2 well known academics that are connected to universites,

    I can think of hundreds of other papers and leads, there are papers on heart anomailies, immune problems, muscle problems, endocrine, neurological etc, please someone correct me if I am wrong but I beleive there are over 4000 papers published on biological anomalies in the illness, (this should go some way to explaining why patients are extremely fed up of talking about psychology)

    There are doctors around the world using various treatments but there is yet no golden bullet, but some of the treatments are antivirals, antibiotics, immunemodulators, endocrine treatments amongst others. I hope this is interesting and enlightening
  12. Thanks Jimm

    I will have a look at those.
  13. natasa778

    natasa778 Senior Member

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    Maarten wrote
    Bingo.

    btw thanks for the compliment earlier on


    and have a :balloons: HAPPY BIRTHDAY :balloons:
  14. Knackered

    Knackered Guest

    One more thing I'd like to add, when Marten first came here he made a post on BS saying he was coming here to "Engage". If you look on their forum "engaging" is what they do when they want fight, they all came here looking for a fight, seeking to prove us all wrong stating we're all mentally ill.

    Shame on them all.
  15. flex

    flex *****

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    ON THE SUBJECT OF ME OR "ME/CFS"

    1) where does Ben Goldacre work as a Doctor as he claims to do so and in what capacity

    2) if the WHO has listed ME as a Neuro immune disease since 1969 and every official agency in the UK recognises that why do we have the term"CFS" which was essentially introduced by insurance companies

    3) Why does the government, the media and the Bad Science website not cover the ongoing studies of the WPI the Cleveland Clinic and the National Institute for Cancer on ME and the retrovirus XMRV ( HIV aids is also a retrovirus) and explain all the surrounding politics.

    4) Why does the UK government have issue relating to ME locked away until 2028 and now have extended it until 2071.

    5) Why do people trust psychiatry a “profession” which has claimed MS and other diseases were “Hysterical Paralysis”

    6) Why was the blood for the UK studies on XMRV supplied by Psychiatrists and particularly Simon Wessely in the Imperial College study when XMRV is a retrovirus and not a psychiatric issue

    7) Why is Simon Wessely the proponent of his own term CFS and why did he redefine the illness ME to rule out dealing with people suspected of neuro immune disease and or CNS damage when these later two issues are organic and not psychiatric

    8) Why are people like myself suspected of having MS until MS tests come back negative and then dumped into the blanket term CFS which is now a catch all phrase encompassing any thing the medical profession wants to

    9) why are people with clear physical disease of organic cause not included in blood studies for XMRV in the UK when the studies claim to be studying people with ME the neuro immune disease

    10) Why has the government not announced that British ME residents having their blood tested in the US are XMRV positive (retrovirus positive)

    11) Instead why has the Imperial College London study claimed that XMRV is not present in the UK after the contentious IC study when Simon Wessely provided the blood from his clinics of “CFS” patients when it appears he is dealing with “fatigued patients” ,whatever that means , and not ME neuro immune disease patients.


    12) why was the above IC London study (Simon Wessely and others) published after only three days in a pay to publish magazine. The original US study finding a retrovirus in ME patients was published in "Science" the worlds leading scientific magazine after being peer reviewed for 6 months and being validated by the Cleveland Clinic and the National Institute of Cancer

    13) Why has the Centre for Disease Control in the US taken “CFS” away from Bill Reeves and given it to HIV specialists to study after moving the head Bill Reeves out of the project altogether after millions of dollars of taxpayers money was spent chasing and promoting a psychological paradigm of ME known as CFS in the US

    14) WHY ARE JOURNALISTS NOT ALL OVER THIS STORY

    15) Why have a number of countries banned blood donations from ME sufferers

    16) Why are so many psychiatrists claiming to be working with ME neuro immune patients paid by employed by or advisors to Insurance companies and Government Departments who consider themselves not liable for payout for “psychological Illnesses”

    17) Why do psychiatrists advise governments not to offer medical tests to “CFS” (ME is officially coded as a neuro immune disease) patients and then claim that they are medically unexplained and therefore they become liable for non payouts and exempt from any real medical treatment ---- this has set the medical and scientific research in ME back decades and left people suffering unnecessarily and in dire financial positions. However, some would conclude this has saved governments and insurance companies millions of pounds and dollars.

    18) Why is any person reading this at risk of receiving blood donation contaminated with a retrovirus XMRV because the government have historically failed in their duty to protect the blood supply and instead under questioning have said that ME patients can give blood if they are "symptom free". What on earth does that mean and how would one know they were ill in the early stages of disease if symptoms are yet to manifest just like in HIV aids.

    19) Is it not now the government who should be accused of BAD SCIENCE and their psychiatric advisors who have benefited to the tune of millions of pounds of taxpayers and insurance company money.


    All ME participants in this thread please add to the above with similar factual information

    All onlookers please see the difference between BAD SCIENCE and NO SCIENCE then make the connection to POLITICAL and COMMERCIAL SCIENCE. Science can not be evaluated as being bad until one looks at all the information.

    PS
    ANYONE PLEASE TELL ME WHERE BEN GOLDACRE WORKS AS A DOCTOR IN WHAT FIELD, HOW MANY PATIENTS HE SEES PER WEEK IF ANY, WHAT SCIENTIFIC STUDIES HAS HE EVER BEEN INVOLVED IN AND HOW CLOSELY HE KNOWS SIMON WESSELY
  16. Adam

    Adam *****

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    Very nice Kim. :Retro smile: Eloquent. ;)

    How about; Will all trolls gather at the nearest exit where they will be met by a Moderator and escorted off the premises.:tear:

    Did you notice I cheated a bit?
  17. pollycbr125

    pollycbr125 Senior Member

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    :D
    lmao thats the best laugh ive had all day:D
  18. Min

    Min Senior Member

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    well said


    if anyone doubts they have come here to bait us, they say of us on this forum that we:

    " bear all the hallmarks of a cult, and to the dimmer more vociferous ones a criticism of one is perceived as a criticism of all. No minimum level of academic attainment or critical thinking faculty is required to be allowed to speak for them."

    and that we are "" paranoid, hysterical and delusional"

    and, the worst from of abuse they can think of being puerile swear words for female genitalia, Maarten is called a
    " self-absorbed t*** who's descended into madness."

    one person has posted that Dr Myhill's supporters tell lie, after lie after lie ...ad infinitum

    - the lampooning and baiting of dr Myhill's supporters has been relentless for 131 pages, & yet 'Jonas' has reported to the GMC that her supporters on BS are intimidating him!

    - please can we get back to supporting Dr Myhill and leave the bigots on the load of BS forum to enjoy themselves in their basements?
  19. Robyn

    Robyn *****

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    Maybe he (BEN GOLDACRE) should spend some time on Simon Wessley's couch. I have found through life experience that individual's that tend attack other's were usually the kids that were bullied and picked on the most as children. Therefore they chose groups or individuals that they can put down to make themselves feel superior. Usually the sick or weak and in some case even small defenseless animals. When all they really needed was some therapy. Hey maybe he and Simon could trade off on the couch. They could anaylize each other and bring those bent up feelings to the surface. Then maybe their complex feeling of superiority personality disorder could be treated.
  20. I don't think anyone from the Bad Science forums has come over here to look for a fight or to try and prove anything. I suspect most of them have come over because they believe that some of the things posted in this thread are incorrect (like Ben Goldacre having a doctorate; unless I'm mistaken, he is a medical doctor specialising in psychiatry) or because they believe that Angela Kennedy's description of the forum's membership (e.g. "a bunch of anonymous people who cannot think outside the box") is inaccurate.

    I can see why you might think that people who aren't interested in ME/CFS or in helping/supporting ME/CFS patients shouldn't be posting here, but it shouldn't be surprising that a thread about the Bad Science forum should attract members of the Bad Science forum. I wasn't surprised when Jonas' posting about Dr Sarah Myhill's GMC hearing attracted so much attention and contributions from the ME/CFS community; that's how the internet/www works.

    I also think some people on the Bad Science forum could have been more polite towards the guests (for want of better words), but I'm not in a position to tell them how to behave (ditto for the authors of some of the posts in this thread, especially those from Adam, which are just infantile).

    I don't think many people from over there and many people from over here are ever going to agree about some of the stuff on Dr Myhill's website. Ultimately, it depends on whether you think her (I'll take your word for it) success with some ME/CFS patients is more important than any harm that some of the ludicrous material on her website might cause. Utilitarianism etc.

    For what it's worth, I know or have known several people with ME/CFS and am not uninterested in the condition or the people who have been struck down by it (one of my close friends has been ill since she was teenager).

    I've also been ill (with something else) since my teens and both me and my close friend have only been able to achieve a fraction of what people of our intelligence (although she's much more intelligent than me; IQ of 170+) usually end up achieving.
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