1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

New GP Guidelines for Chronic Fatigue Syndrome

Discussion in 'General ME/CFS News' started by LaurieM, Jul 13, 2011.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,168
    NYC (& RI)
    Can one of you guys more familiar with the UK situation write up a letter or better yet a petition that we can all get behind? I'm too exhausted to take this on.

    This document is going to screw us for years. We need to raise hell on this one!
  2. Esther12

    Esther12 Senior Member

    Messages:
    5,132
    Likes:
    5,002
  3. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,777
    The paper is based on National Institute for Health and Clinical Excellence (NICE) guidelines and also incorporates evidence-based strategies available to specialist services (http://rcgp-innovait.oxfordjournals.org/content/early/2011/07/07/innovait.inr073).

    I've learned that evidence-based medicine is a euphemism for a cookie-cutter don't-listen-to-the-patient approach.

    When my oncologist refused me a treatment, he explained that he was bound by evidence-based medicine. But when I pointed out that his refusal wasn't grounded in evidence, he had to agree. That didn't change his position; it only established the futility of any further discussion. He let me know that he was bound by rules of practice (that he couldn't justify), and that I was wasting my breath.

    The evidenced-based (EB) movement is the brain-child of epidemiology, in love with the standardized questionnaire. Now my mechanic seems to listen to my car better than my doctor listens to me.
    justinreilly likes this.
  4. snowathlete

    snowathlete

    Messages:
    2,017
    Likes:
    2,054
    UK
    Im going to my GP today, and i think if get a response like that then im going to lose my temper!
    Its an outrage.

    Regarding these guidelines, we should organise some kind of formal reply as a group and send it to them showing our disagreement with their document, and asking them to explain it. Anyone well enough to draft a focused document?
  5. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,070
    Likes:
    1,573
    Somewhere near Glasgow, Scotland
    I see this as yet more, delicious hard evidence, given to us on a platter by the British Medical Establishment bigots, to crucify them in court with!
    Give a man enough rope and he'll hang himself, and they sure have! Muhaha! ;)

    Seriously, all this is evdience of either bigotry or abuse-to-save money, non-science-based psychobabble garbage of sick and dying people, like having the Klu Klux Klan in charge of medical services in a non-white area or the like, and so, one day we should see these scumbags in court and gettign jailed for crimes against humanity and genocide, because that's what the charges ARE for this kind of crap.

    50 years ago autopsies proved hard evidence that M.E. is organic, serious and even lethal
    Anyone after that who says otherwise is FULL OF CRAP, especially in light of further autopsies since then supporting this (inflammation and damage of deep areas of the brain...great, wonderful, I cna't even remember name of that part now, gawd damn brain damage is screwing me up, lol)



    And IF FOLK SCREAMED SHOUTED THIS AT PARLIAMENT, MAYBE THE COWARDS IN THERE WOULD REALIZE THEIR ASSES ARE IN DEEP S**T, AND DO SOMETHING BEFORE THEY GET TARRED WITH ABUSE, TORTURE AND MURDER OF THE DISABLED, AND THUS, DESTROY THEIR PRECIOUS POLITICAL CAREERS!
    hm?
    squeaky wheel gets the grease!
    Being nice and polite like in an English tea party gets you booted into the gutter and left to die where you can't be seen, because this is buger all to do do with decent, normal behvaiour. This is organized, deliberate abuse on an enormous scale, of the sick and dying for profit and/or bigotry.
    Only human VERMIN do such things, and you fighting vermin is dirty.


    and NO this post is nothing to do with violence, jeesh, before anyone gets "shirty".

    a) "Give a man enough rope and he'll hang himself" is a very old, wise proverb, as the Weasels have indeed laid a huge trial of actions and words the sum of which would be awesome evidence in court

    b) Being "crucified" is a euphamism for getting the worst out of some situation (I know we've got cognitive problems, but come on! UK doesn't even hang folk now, thank goodness.)

    c) When I say "we need to fight dirty" I do NOT mean freakin' Al-Qeda style, just that talking politely on forums will not change this situation, but writing polite, well written but hard hitting letters to your MP etc will do far more good than hoping "science" will save us, evidence for 50 years has done nothing to prevent these scumbags because THEY DON'T CARE! They're scumbags, what do you expect? :p

    D) the fact that this garbage was offcially sanctioned proves that this is deliberate abuse and murder by neglect from the highest reaches of the medical establishment and government. That IS A CRIME AGAINST HUMANITY, it is also, state-sanctioned murder by neglect.
    If the State said to GPs that "Anyone with congestive heart failure is to be ignored as it's all in their head!" (and thus save government money from treating them)...that would be mass murder, THIS IS NO DAMN DIFFERENT!

    sorry for so much use of caps, but this is...monstrous and one does not drink tea and play with the band as the Titanic goes down or the Nazis invade Poland!
    One builds liferafts with doors, mans the barricades, etc ;)
  6. snowathlete

    snowathlete

    Messages:
    2,017
    Likes:
    2,054
    UK
    ok, how about this. Why dont we establish a charitable fund, and collectively get money together with which to take these people to court.
    Its one of those situtions where a pound from each patient with ME would be plenty. At least to get started.

    I could set up a site and get this started, but really it needs sponsorship and management by an established me charity. BUt thats not impossible.

    What do you think?
    taniaaust1 likes this.
  7. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    We are talking about a UK based action here, aren't we? What's needed is someone with legal training to look at setting up something parallel to the M.E. Human Rights Association, which is US based, and has some legal eagles (with ME natch) working out the first steps. I do not have sufficient knowledge, but I would be happy to be a foot soldier in such an initiative.

    We would possible want charitable status. Then to start a fundraising campaign, and seek a legal team to prepare a case. For me, it has human rights abuse written all over it.
  8. snowathlete

    snowathlete

    Messages:
    2,017
    Likes:
    2,054
    UK
    the problem, as my father just pointed out to me, is that the system is set up in such a way, as to make it very difficult to mount a legal challenge.

    NICE make reccomendations, but have nothing to do with implementing them. THe government takes the NICE reccomendations and implements them.
    So if you try to sue the govt. their defence is "just following expert advice."
    if you try to sue NICE, they say, "we are nothing to do with your treatment, or lack thereof."

    You also have to prove intential abuse of patients, which although not impossible, is very hard.
    Public help - well, the average joe who is well doesnt know much about our abuse, and it doesnt effect them directly. Do they not care then? Well, some do, but they are either powerless themselves, or just as likely they are busy worker bees working 40 plus hours a week with no time to think or act on our behalf. So, until it effects you directly it doesnt 'really' matter to you.

    In order to get somewhere, i think we would need a very clever lawyer who can help us establish a very specific angle of attack. I know nothing of law really, so unfortunately i am not this person. But i will support someone else if they are.

    The other option is to do something with high publicity, like Fathers for Justice do, or the anti-capitalists camped outside St. Pauls.
    At least if we were there and were asked to move, we could honestly say that we werent up to it...
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,168
    NYC (& RI)
    In the US for malpractice, you just have to show negligence (carelessness) not intention to do harm. This isn't the case in the UK?
  10. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,070
    Likes:
    1,573
    Somewhere near Glasgow, Scotland
    Justin
    wha tthey have done and it's ocmmon in the oh so old-school-tie corrupt UK, is to set up systems where by no single person/group cna be eaisly held accountable, so they cna get away with anything and saves them havign to work on things.

    constant one you hear in the UK is the line "We'll bring in codes of practice"
    note that, not laws, not regulations just "codes of pratice" which are not enforced by law, those invovled are merely expected to "signup to them" (pay lip service in effect), and have no punishments or any damn use at all :/
  11. orion

    orion Senior Member

    Messages:
    101
    Likes:
    64
    UK
    To be fair, I think that happens everywhere. I mean how many individuals have been held to account for the meltdown in the global financial system? Off the top of my head I can't think of anyone. On the contrary. Most of the perpetrators are still receiving obscene bonuses as a reward for their corrupt, self-serving, unethical behaviour. They all hide under the banner of collective responsibility, or blame it on "the system".

    And another favourite get out of jail card for people in positions of power and responsibility who screw up is for them to claim they were only "acting in good faith". That phrase always infuriates me. It's basically a coded way of saying they can do whatever they damn well please (and not be held to account) as long as it can't be proven to involve extreme negligence and/or outright criminality.
  12. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,070
    Likes:
    1,573
    Somewhere near Glasgow, Scotland
    True, but here they've made it into a true artform! ;)

    as I keep saying, note the huge incestous web of connections between the elite, and top positions in "Quangos", safety bodies, exec positions etc
    We do *not* live in accountable, representative Democracies under the rule of Law
    We live in sick oligarchies headed into total meltdown because of these gutless, greedy, sociopathic sphincter-suckers! :p

    (and in case anyone misconstrues me yet again..."incestous" as in, closely connected groups of people who ensure their web of "in people" gets the cream of the crop and cherry picks positions on many boards/committees etc to keep their dominance, I am NOT reffering to actual sex/genetic relationships, though you often find their spouses/cousins/siblings being used to hold different positions and thus avoid being too obvious about their dominance. I am reffering to particulalry cunning and unhealthy nepotism)
  13. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,777
    And Wessely knows the value of protest in this context...so he launches his own!
  14. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    770
    Does anyone think the rituximab research will lead to better treatment for us and to an acceptance of the fact that we are genuinely sick?

    Because I am having trouble believing this.
  15. Vitalic

    Vitalic Senior Member

    Messages:
    108
    Likes:
    46
    If the results are replicated in larger scale trials and there is some progress in understanding the underlying mechanisms involved which caused some people to improve and not others, then it will have to, if there is a proven auto-immune component then talking therapies immediately become obsolete, it would at that stage be no different to sending someone with Rheumatoid Arthritis to a psychologist.
  16. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,070
    Likes:
    1,573
    Somewhere near Glasgow, Scotland
    Often thought a lot of these pychobabblers have Rampant Arseritis of the Common Sense Gland, but that's just me :p
  17. Vitalic

    Vitalic Senior Member

    Messages:
    108
    Likes:
    46
    They do tend to give that impression. I believe the majority are well intentioned though, certainly the low level practitioners are just doing their job (I know, I know, Nuremberg trials) and they no doubt genuinely believe the hogwash that is fed to them by the upper echelons of the Wessely school. Certainly the GET therapist I have is a kind and respectful person who is desperate to help her patients, but due to confirmation bias or who knows what she simply cannot accept that there is an illness here that is not psychological in origin.
    justinreilly likes this.
  18. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,070
    Likes:
    1,573
    Somewhere near Glasgow, Scotland
    Vitalic
    well as I keep moaning about, major problem with our entire species is, in social context, most folk always kow-tow to the "group's gestalt/orthodoxy"
    Forget name for that bit of pschological weakness, at present, sigh (oh for a new cranial CPU and RAM!, lol)

    so these folks, even if decent, cannot, WILL not see beyond what their group allows: politics, religion and science like it or not, are riddled with this problem
    Whenever they see somehting they can only see it in terms of THEIR bailiwick, so they will come at a problem from their area, without thinking of the broader possibilities.
    They force the square peg to the round hole, instead of seeing if the square peg is correct at all and if not, how to use their skills with the square peg to best work on this round hole problem.

    ie a blinkered psychologist will see an unidientified illness with no obvious cause, as psychological first and foremost, rather than see how psychology can understand and aid the patient's issues. Again as said before, Wessely, Reeves etc didn't just put the cart before the horse, they put the cart horse in the damn driving seat! :p


    also, as you note, why many sane folk follow raving bloody maniacs (issue is not that Stalin, Hitler etc were monsters, but that folk LET them have such power and supported them to the bitter end, instead of chucking them in an asylum or merely, "slinging them a deaf ear", and saving a hell of a lot of harm from occuring)
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,168
    NYC (& RI)
    I totally agree. There will always be evil, anti-social, sociopathic, sadistic, greedy people out there including in positions of power and influence including physicians and academics. Society needs to do a much better job of accepting that fact, recognizing these people and weeding them out.

    At some point i plan to read up on these type of people to figure out how to counter them and make society more aware. Anyone have any ideas? How do we get past the "but they're scientists, they have no motive to lie and abuse people" that is most people's reaction to our attempts to raise awareness of the abuse?
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,168
    NYC (& RI)
    I would be very surprised if it didn't. I think everyone will realize that given the facts of the situation: that ME is very strongly linked to lymphoma and that oncologists noticed that chemo for lymphoma helped ME and then a pilot study and then a big well done study showed effectiveness (hopefully). It's not the placebo effect because it occurs months after treatment. If you give chemo to a person with a mental disorder, a healthy person or any person without cancer, RA or ME, they will get worse as their immune system is destroyed.

    There is no possible way to explain these facts other than that the disease is organic.

See more popular forum discussions.

Share This Page