1. Patients launch $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!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

Discussion in 'General ME/CFS News' started by Firestormm, Jun 18, 2014.

  1. biophile

    biophile Places I'd rather be.

    Messages:
    1,399
    Likes:
    4,851
    Convenience could also be a significant factor. Think about it:

    a) carefully read hundreds of pages to get up to date on a complicated issue and spend many hours in contemplation,

    or,

    b) merely appeal to simplistic psychosomatic explanations, the great quasi-magical gap filler in medicine, equivalent to the "god of the gaps" in philosophy, and feel a sense of smug righteousness issuing forth the harsh truth to deluded masses.
     
    vli, Sean, xchocoholic and 4 others like this.
  2. Sidereal

    Sidereal Senior Member

    Messages:
    295
    Likes:
    786
    They had a wasting disease and were dying which made their disease visible.
     
    vli and Wildcat like this.
  3. adreno

    adreno 3% neanderthal

    Messages:
    2,582
    Likes:
    1,926
    Tundras of Europa
    The killer here will always be the lack of objective diagnosis. As long as this is not possible, a large part of the medical community will always see ME/CFS as false illness beliefs. There is no need for psychosomatic magic to explain illness, because there is no objectively testable illness there, it's all in the patients minds. You can claim to have symptoms, but as long as these symptoms don't show on commonly accepted tests, they are not real in the minds of the medical community.
     
    Kina, beaker, Sean and 4 others like this.
  4. JoanDublin

    JoanDublin Senior Member

    Messages:
    176
    Likes:
    391
    Dublin, Ireland
    mango, rosie26, beaker and 8 others like this.
  5. Sasha

    Sasha Fine, thank you

    Messages:
    8,730
    Likes:
    8,020
    UK
    Outstanding response from Dr Shepherd there, and he provides a link to this thread here on Phoenix Rising to demonstrate to the Service Manager of the Essex CFS Service the shock and consternation felt by patients (and Prof. Edwards, of course).

    Thank you, @charles shepherd. It's absolutely right that Essex CFS Service are made aware of this.

    @Jonathan Edwards - just a heads-up on this so that you're aware you post has been seen.
     
    rosie26, vli, beaker and 5 others like this.
  6. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    My 2 cents. I've been sick for 24 years and along the way have been told multiple times by DOCTORS that lazy doctors are diagnosing their patients with cfs. So doctors have no choice but to assume every patient dx with cfs is misdiagnosed until proven otherwise.

    Some simply can't be bothered running the right tests or due to rigid med school training they're unaware of how certain tests aren't reliable. Keeping up with new info is too much trouble. Most of us on the web have heard how thyroid, celiac, adrenal, nutritional, etc tests are inadequate.

    Other doctors know this is happening but the medical community hasn't taken steps to resolve this. The integrative or functional medicine trend is an attempt to remedy this. But many doctors are threatened by this trend due to a perceived decrease in their income. No doubt healed patients won't require as much medical care.

    Tc ... x
     
    Last edited: Jun 20, 2014
  7. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    That's why I started the "What labs/tests are you POSITIVE for ? " Thread.

    We do have positive results.

    Tc .. x
     
  8. Sasha

    Sasha Fine, thank you

    Messages:
    8,730
    Likes:
    8,020
    UK
    I think the only logical response to an awareness that lazy doctors (who of course are not all doctors, and I would hope are a minority) diagnose patients with CFS when they can't explain their symptoms is that SOME patients with a diagnosis of CFS are misdiagnosed. The sensible thing to do then would be to attempt to confirm or disconfirm the diagnosis.

    To dismiss an entire disease because some doctors use CFS as a binbag diagnosis is simply not logical.
     
    vli, Min, Valentijn and 2 others like this.
  9. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,525
    Likes:
    2,069
    London
    UK NHS doctors don't usually accept our "postive" lab results. It's simply not relevant to them if they are presented with a folder of printout from labs that are not NHS ones. I know because I have been doing it for over 20 years.

    It's a very rare UK NHS doctor indeed who will take one of these results seriously.

    The doctors who do regard ME and CFS as being psychosomatic diseases regard the USA/UK doctor who are ordering the tests and treating patients as colluding with our delusion that we are sick or charlatans exploiting this.
     
    Last edited: Jun 20, 2014
    vli, Min, Valentijn and 4 others like this.
  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    Via Twitter @actionforme (Action for M.E./AfME)

    We've responded to comments made online this week in response to BMJ article, What causes chronic fatigue syndrome?: http://www.actionforme.org.uk/get-informed/news/our-news/comments-on-bmj-article-our-response

    AfME's response has not yet been moderated by the BMJ RR editor.

    I thought it was quite interesting that the RR's authors should dredge up a BMJ article from 2004, the week that the Julia Newton paper was press released.
     
    Kina, beaker, Wildcat and 3 others like this.
  11. Sasha

    Sasha Fine, thank you

    Messages:
    8,730
    Likes:
    8,020
    UK
    Excellent - very pleased to see that. ME patients in Essex deserve a professional, compassionate and accountable service.

    I'm looking forward to seeing what response the MEA and AfME get from the relevant authorities.
     
    Valentijn and justy like this.
  12. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    Sasha, MEA's Dr Charles Shepherd has written to the Essex CFS Service Manager.

    AfME has responded to the BMJ Rapid Response, which is waiting for the RR Editor to moderate it. AfME has said if the RR is not let through onto the BMJ site (and I shall be surprised if it were held back) the text will be posted on AfME's website. But I don't think AfME has also written to the Essex CFS Service.
     
    justy, Valentijn and Sasha like this.
  13. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    It's logical if you follow the money trail. Or if you consider how inflexible the medical community is.

    Or ... I'm not sure what to call this but I keep running into a "loyalty" mentality where doctors or other medical professionals condone bad behaviors from their peers. Thus perpectuating the ignorance and incompetence.

    Or ? ...

    I'm sure some, maybe most, people in the medical community aren't aware that they're being used as pawns by their employers or big pharma.

    Thankfully the general public is spreading the word. I run into people everyday now who are aware of the role big pharma and $$$ are playing in our healthcare.

    I was naive about this for 50 years so kudos to those who learned it sooner.
    And to all those medical professionals who are really interested in helping patients.

    Tc .. x

    Eta. I have to stay away from this thread. It's upsetting my juju. ☺
     
    Last edited: Jun 20, 2014
  14. Sasha

    Sasha Fine, thank you

    Messages:
    8,730
    Likes:
    8,020
    UK
    Yes, you're right - thanks!
     
  15. bambi

    bambi

    Messages:
    49
    Likes:
    51
    @Professor Edwards, @Dr Charles Shepherd

    Thank you so so much for standing up to such insult and the witch hunt conducted against a whole patient community.

    May I remind you that Karina, a young woman with severe ME, has been kidnapped, held against her will and is being mistreated by "doctors" who belong to the same school of dangerous ideas. These "doctors" inflicted psychological and physiological trauma to a very sick patients which can never be undone.

    It is time for the medical community to stand up to such malpractice and dangerous ideas.

    May i suggest a formal complain is logged against the author of this horrendous article.

    Furthermore, I would suggest that there is also an official complain logged and an investigation initiated into the practices of doctors who are mistreating and holding Karina against her will.

    Such kind of abuse of power and malpractice by "doctors" has to stop!

    Such "doctors" have to be deregistered and their license to practice has to be revoked.

    Please help us to save Karina .

    I am calling on all doctors to help us to stop such abuse and malpractice against patients with ME.
     
    Min and JoanDublin like this.
  16. alex3619

    alex3619 Senior Member

    Messages:
    7,664
    Likes:
    12,428
    Logan, Queensland, Australia
  17. Gijs

    Gijs Senior Member

    Messages:
    145
    Likes:
    141
    This 'doctor' must be charged by gaslighting because spreading the meme that ME is meme without objective data.
    This meme fantasy can not be true because i know many ME patiënts never heard about this disease before they get diagnosed and had severe symptoms.
     
    Sean, Min, Keela Too and 1 other person like this.
  18. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,686
    Likes:
    10,097
    Amersfoort, Netherlands
    This is even worse than the other letter, in my opinion. The first was just crazy and nauseating. But this guy is expressing outright hatred and contempt.

    Is it our choice that the initials of the disease spell "ME"? Should society start deriding patients with other diseases which have unflattering abbreviations or acronyms?

    Why do they feel that any patient ever deserves derision for acquiring any disease, biological or not?

    Is this sort of pathological hatred common in the British medical system? It's certainly been tolerated quite well by it.
     
    Last edited: Jun 20, 2014
    vli, beaker, SOC and 8 others like this.
  19. A.B.

    A.B. Senior Member

    Messages:
    755
    Likes:
    2,224
    Like I said: they think we are just misbehaving, not sick. If they make us feel uncomfortable, that will surely teach us not to misbehave.
     
    Last edited: Jun 20, 2014
    Cheshire and Valentijn like this.
  20. Sasha

    Sasha Fine, thank you

    Messages:
    8,730
    Likes:
    8,020
    UK
    What is extraordinary to me is not that there are some doctors who joke about this in privacy - I think we all knew that that went on - but that one of the two top general medical journals in the UK chose to publish it and thereby legitimise it. Just jaw-dropping.
     
    vli, Wildcat, beaker and 7 others like this.

See more popular forum discussions.

Share This Page