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!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

Sunday Times: Feature Article expected soon

Discussion in 'General ME/CFS News' started by Firestormm, Feb 6, 2013.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,889
    Likes:
    4,658
    Cornwall, UK
    Success - the brainwashing - sorry - CBT -really works! ;)
     
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,889
    Likes:
    4,658
    Cornwall, UK
    Indeed it has - to people with dark skin, to Jews, to Gypsies, etc.

    As a scientist myself, I find the quality of British science journalism depressingly poor. It seems to have been increasingly 'dumbed-down' rather than trying to inform people. This applies to TV news as well as newspapers. In general I find CNN and Euronews more rigorous.

    I was appalled by a piece in the weekly BBC Radio 4 programme Inside Health last year which featured an extremely-patronising 'expert in functional disorders' (I wonder how you qualify as one of these?) purportedly curing someone with a unilateral paralysis. As someone who suffered one of these as a child (facial - quite likely due to a herpes virus) and who has done a lot of reading on the subject, I know that these commonly recover spontaneously over time. (Unfortunately mine did not.) So it is easy for someone to wave a magic wand, say 'Abracadabra', pray or whatever else and then claim that THEY have effected the cure.

    The programme can be heard here:

    http://www.bbc.co.uk/programmes/b01n65zl?oo=0

    Prepare for a rocketing of blood pressure! I emailed the programme to complain at the way this piece was presented as fact, without any supporting information.
     
  3. barbc56

    barbc56 Senior Member

    Messages:
    1,581
    Likes:
    984
    I applaud Dr. Shepherd for engaging with the journalist. He has a lot of credibility and this may help our PR.

    If we avoid talking to anyone who we perceive as the against us, it could hypothetically backfire in another way and make us appear dogmatic. It can also give the BPS an excuse to not engage with us in a rational manner.

    I am not saying to bend over backwards for these people but we have to keep chipping away at this undeserved stereotype of patients and how our illness is perceived. It might take one chip at a time but I believe that what Dr. Shepherd did is heading in the right direction and a smart strategy for advocacy.
    Barb
     
    peggy-sue likes this.
  4. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,727
    Likes:
    10,254
    Amersfoort, Netherlands
    Fortunately I don't think anyone has characterized the journalist in question as some sort of enemy, nor do I see a cause for anyone to consider us dogmatic.

    Agreed ... I think pretty much any advocacy regarding ME/CFS and the situation of ME/CFS patients is a step in the right direction :hug:
     
  5. barbc56

    barbc56 Senior Member

    Messages:
    1,581
    Likes:
    984
    Thanks Val. I changed my post to a less problematic word.:)

    I was speaking of a hypothetical situation in answer to one of the posts above. I'll see if I need to edit that, also.

    Great, I am batting two for two today!! Not that anyone's counting.:rolleyes:

    Barb
     
    peggy-sue and Valentijn like this.
  6. alex3619

    alex3619 Senior Member

    Messages:
    7,727
    Likes:
    12,658
    Logan, Queensland, Australia
    Hi MeSci, this is the basis of quackery. They find and treat 100 people, 10 get better, they claim they were responsible for the cure and now have ten anecdotal claims for a cure. Two or three of those patients are so enthusiastic its a cure they promote the treatment or join as a salesperson, and the quackery spreads.

    To my knowledge not one case of a functional psychiatric disorder has ever been proved; not one psychosomatic diagnosis has ever been shown to be caused by the mind. However quite a few such diagnoses have been proved physical, from epilepsy and diabetes to rheumatoid arthritis. They keep claiming mental causation on the basis of outdated unproven hypotheses, with their sole claim to evidence being empty papers that prove nothing, that point to other empty papers, that point to even more empty papers. Typically they assemble vague subjective "supporting" evidence showing vague association but not causation. Further their methods are vulnerable to considerable bias, particularly those relying on patient questionaires.

    There are good reasons why Karl Popper called this kind of thing nonscience. Its structure is based on faith and rhetoric, and not rational examination and testing.

    Bye, Alex
     
    peggy-sue, Valentijn, Kati and 2 others like this.
  7. biophile

    biophile Places I'd rather be.

    Messages:
    1,412
    Likes:
    4,953
  8. alex3619

    alex3619 Senior Member

    Messages:
    7,727
    Likes:
    12,658
    Logan, Queensland, Australia
    I am not sure this MRI will help with things like brain function, the intended target is tiny. However it should allow scanning of function inside a cell ... when the technology is available. To scan cells like that is a big step forward if they can get it to work. A lot of the diseases which defy full medical scientific understanding, from diabetes to MS and ME, involve intracellular disturbances. If you can map those with a scanner it might help us understand a lot more. It might also rewrite the textbooks on subcellular organelles - currently we rely heavily on crystallography and electron microscopy at small scales, as optical microscopes are limited. Both crystallography and electron microscopy actually change the target during preparation, so its never fully certain that what is seen is what is there in a living cell. If this does not have that effect, we might finally be able to see the inner workings of a cell without distortion.
     
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,889
    Likes:
    4,658
    Cornwall, UK
    At least it's better than looking at mice!
     
    Shell likes this.
  10. Shell

    Shell Senior Member

    Messages:
    477
    Likes:
    613
    England
    I am more and more thinking that William Osler (along with Tolkein, Chesteron and other people who could actually think) are right - we are far too over-reliant on machines.
    It's time to get some balance in this and try looking at the patient.
    I'm sure better machines will come in time, but no matter how fancy the equipment it's a pile of nuts if the medics don't know how to look at what's in front of them or listen to the patient.
    I got five different assessments from 5 different neuros (the NHS has a never-see-the-same-doc-twice system it seems to me) all from ONE MRI. It did not inspire me to trust them:rolleyes:
     
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,889
    Likes:
    4,658
    Cornwall, UK
    I doubt whether that is a record either! Medicine is largely based on opinion rather than being an exact discipline. When I was studying dementia, I found that scientists/medical experts could not agree on whether brains from deceased people had vascular dementia or Alzheimer's, or even in some cases whether the people had dementia or not! A scientific paper I read which purported to show benefit from a drug for Alzheimer's showed 'before and after' brain scans, but even a Master's student (me) could easily see that the 'before' brain did not show dementia but depression...

    (The fact that the study was funded by the drug manufacturer may have played a role in this sloppiness, but they must have known that a few proper scientists would see the images and say "Hang on a minute...")
     
  12. biophile

    biophile Places I'd rather be.

    Messages:
    1,412
    Likes:
    4,953
    This does not inspire much trust either:

    Over the last 4 years, 56 men were each paid £20,000 compensation after NHS surgeons removed the wrong testicle.

    http://www.dailymail.co.uk/news/art...-compensation-men-wrong-TESTICLE-removed.html
     
    Shell likes this.
  13. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    How the heck can you tell someone had depression from a brain scan? And a deceased brain at that?! Not heard of that being possible before. Blimey. The wonders of technology. The mind boggles :eek:
     
    Artstu likes this.
  14. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,727
    Likes:
    10,254
    Amersfoort, Netherlands
    Depression is often correlated with physiological abnormalities. I do think diagnosing it off a brain scan sounds a little suspect though, unless depression looks markedly different from other neurological disorders. Excluding dementia does seem to be a realistic possibility, however.
     
  15. tatt

    tatt

    Messages:
    48
    Likes:
    44
    If no-one engages with journalists they never learn. There is evidence that in the uk many people with ME are misdiagnosed and have other illnesses (studies at Newcastle and elsewhere). Some of these patients have psychiatric illnesses, some have sleep disorders, some have other physical illnesses causing fatigue.

    Personally I have a scientific background and I can understand the journalistic scepticism. It's necessary to fight this scientifically - with e.g the studies that show an abnormal response to exercise, especially on the second day and with proper criticism of the PACE trial that focuses on describing patients as improved when they are still extremely ill. Decent scientific studies are beginning to emerge, although not generally in the UK. With proper effort the Sunday Times might present this as the national scandal that it is - public money being wasted on mistreatment of people who were often high achieving and are keen to recover. I am beginning to recover myself and hence now have some energy to respond to these issues. My partial recovery is certainly not due to CBT or GET but to correcting vitamin deficiencies and the methylation protocol.

    The ME community need to recognise that there is a stress related component for some people with ME and that CBT and GET may have a minor role for some patients. The real problem is that they make some patients worse (exercise made me ill) and that no effort is being expended to find something for patients made worse - and soemthing more effective for those who do benefit slightly.
     
  16. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,727
    Likes:
    10,254
    Amersfoort, Netherlands
    I think psychiatric diagnosis in any context related to ME is an extremely uncertain area. The questionnaires commonly used in British BPS studies are usually inappropriate with any physically ill patients, more so if that disease is chronic and/or affecting multiple systems. Inability to watch TV, for example, will be taken as an indication of depression, and pain + fatigue + cardiological symptoms will equate to psychosomatic disorder. While it is possible that a significant number of patients with ME are actually misdiagnosed psychiatric patients, I have yet to see any convincing evidence of that.

    I'm not sure how sleep disorders would get diagnosed as ME. We certainly have them in abundance, but I'm not aware of any sleep disorders causing actual PEM. I wouldn't be too surprised at other physical disorders being misdiagnosed - in many cases, once a doctor suspects ME, all testing and referrals come to and end.

    I'd say that this is no more applicable for ME patients than it is for cancer patients or any other random person on the street. It might have a minor role for some patients, but not by virtue of them being ME patients. And it's necessary to keep in mind that the CBT used in ME is intended to convince us that we aren't physically ill - it isn't used for dealing with stress.
     
  17. Purple

    Purple Bundle of purpliness

    Messages:
    1,400
    Likes:
    2,312
    In practice, given how little education there is among the medical profession re. ME in general (though of course there are exceptions) and some just don't care enough, I imagine it would go something like this:

    Patient: "Doctor, I am feeling very tired."
    Doctor: "You have chronic fatigue syndrome."
    Patient: "Is that ME?"
    Doctor: "We prefer chronic fatigue syndrome but patients seem to prefer ME."

    Years later... what about checking if you have a sleep disorder? Bingo!
     
    Valentijn likes this.
  18. tatt

    tatt

    Messages:
    48
    Likes:
    44
    Sorry I don't understand PEM. Sleep disorders are extremely common and can cause symptoms that may be mistaken for ME, certainly by UK doctors. It's also possible that treating the sleep disorder allows healing in milder cases of ME. I know that when my sleep improved so did other symptoms. It didn't produce a dramatic improvement but a slow change that eventually allowed me to, for example, read these forums and find other things that might help.

    In the uk any testing can be pretty hard to come by and many patients don't get what I see as basic tests (e..g a coeliac blood test). It doesn't surprise me to find high rates of misdiagnosis. As ME is still seen by many uk gps as a psychiatric illness it doesn't surprise me that patients with psychiatric illness are referred to ME services.

    CBT can be used in a lot of ways, I guess it depends who you see. Mindfulness based CBT can actually be useful for stress.
     
  19. Bob

    Bob

    Messages:
    8,917
    Likes:
    12,639
    South of England
    PEM = Post Exertional Malaise
     
  20. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,727
    Likes:
    10,254
    Amersfoort, Netherlands
    Post-Exertional Malaise means getting very sick a day or so after exercise, usually lasting days or weeks. The International Consensus Criteria describes it as:

    The pain is quite a bit different from the localized muscle pain which normal people feel after exercise. If you do crunches with PEM, you'll probably end up with your full body hurting instead of just the abdominal muscles which were used, for example. It can be hard for people to initially pin down what is causing those sorts of symptoms - in many cases, it is blamed on viruses at first, or just being "fatigued".

    If someone doesn't have that symptom, it's a lot more likely that they've been misdiagnosed.
     

See more popular forum discussions.

Share This Page