worldbackwards
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Had these comments as well now. Getting close to bingo! #tense
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Daily Telegraph: It’s time for doctors to apologise to their ME patients (Charles Shepherd)
- Thread starter Simon
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alex3619
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I tried sharing this on Facebook but its failed twice.
PS Oops. I may have tried sharing it with my friends rather than posting it to my timeline. Again, oops.
PS Oops. I may have tried sharing it with my friends rather than posting it to my timeline. Again, oops.
Last edited:
mango
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i'm having some trouble too. facebook let me post the link, but it doesn't show the preview text & image like it usually does...
(some of my friends have managed to post it on facebook without any problems at all.)
alex3619
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I added my comment in reply to an all in the mind statement:
Power of the mind claims are invocation of magic. Please provide a link to any paper that proves, and I mean with objective mechanism, that this can occur. In the absence of such evidence this must be considered, as I said, an invocation of magic.
To drive this point home let me point out that Julia Newton has demonstrated the muscle abnormalities in ME exist in muscle culture long after it is removed from the patient.
The claim we don't know what it is, therefore its psychiatric, is a known fallacy, first formalized by Richard Sykes. Its called the Psychogenic Inference. In the history of medicine no claim, and I mean NO claim, that a disease is psychogenic has ever been proven.
I keep hearing that there is plenty of evidence, but I have had a challenge out there for years. If there is plenty of evidence then someone will have no problem citing a paper that proves any psychogenic illness is mental. I mean PROVES. Its all based on indirect evidence which is vaguely suggestive but which ignores other possibilities. Yet many many many times its merely been that the science has not evolved enough to identify the mechanism, the most famous case of which is the peptic ulcer and H. pylori link.
The list of failures is really huge though, maybe hundreds to thousands of diseases, including tuberculosis, epilepsy, diabetes 1 & 2, all cancer (but especially breast cancer), MS, gastric ulcers, and on and on and on.
If doctors are not diagnosing ME then perhaps its because they don't know how to or don't believe in it? That is a failure of diagnosis.
Power of the mind claims are invocation of magic. Please provide a link to any paper that proves, and I mean with objective mechanism, that this can occur. In the absence of such evidence this must be considered, as I said, an invocation of magic.
To drive this point home let me point out that Julia Newton has demonstrated the muscle abnormalities in ME exist in muscle culture long after it is removed from the patient.
The claim we don't know what it is, therefore its psychiatric, is a known fallacy, first formalized by Richard Sykes. Its called the Psychogenic Inference. In the history of medicine no claim, and I mean NO claim, that a disease is psychogenic has ever been proven.
I keep hearing that there is plenty of evidence, but I have had a challenge out there for years. If there is plenty of evidence then someone will have no problem citing a paper that proves any psychogenic illness is mental. I mean PROVES. Its all based on indirect evidence which is vaguely suggestive but which ignores other possibilities. Yet many many many times its merely been that the science has not evolved enough to identify the mechanism, the most famous case of which is the peptic ulcer and H. pylori link.
The list of failures is really huge though, maybe hundreds to thousands of diseases, including tuberculosis, epilepsy, diabetes 1 & 2, all cancer (but especially breast cancer), MS, gastric ulcers, and on and on and on.
If doctors are not diagnosing ME then perhaps its because they don't know how to or don't believe in it? That is a failure of diagnosis.
sarah darwins
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That one is available online: http://www.telegraph.co.uk/wellbeing/health-advice/the-new-wave-of-talking-therapies/
Quite a few books being pushed in that article, strangely enough.
alex3619
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And this:
Your originating comment is also an ad hominem attack. Please provide evidence and argument.
There are consistent and scientifically replicated abnormalities that now await being proven to be diagnostic. This includes a failure in NK cell function and a sudden and dramatic loss of energy production after activity that is not seen in any other disease to date. These abnormalities are up to 95% predictive, but the hurdle is showing this occurs in no other disease. That takes time, effort and funding.
There is a treatment that has been somewhat successful, the drug Rituximab that was mentioned in the article. We await the results from the phase 3 double blinded placebo controlled randomized clinical trial, in Norway. Preliminary results may be out some time 2017.
Your originating comment is also an ad hominem attack. Please provide evidence and argument.
There are consistent and scientifically replicated abnormalities that now await being proven to be diagnostic. This includes a failure in NK cell function and a sudden and dramatic loss of energy production after activity that is not seen in any other disease to date. These abnormalities are up to 95% predictive, but the hurdle is showing this occurs in no other disease. That takes time, effort and funding.
There is a treatment that has been somewhat successful, the drug Rituximab that was mentioned in the article. We await the results from the phase 3 double blinded placebo controlled randomized clinical trial, in Norway. Preliminary results may be out some time 2017.
alex3619
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Do like the better comments to the article.
worldbackwards
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Thank you to @Valentijn and @alex3619 for kicking ass and taking names in the comments!
alex3619
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- Logan, Queensland, Australia
"The evidentiary basis for ME is much greater than the evidentiary basis for almost any psychiatric disorder. The problem is that this disease is probably heterogeneous, with CFS being highly heterogeneous. So is depression and anxiety. At least ME has consistent, replicated, predictive biomarkers.
If you want to claim that ME does not exist, all the arguments that are used that do not rely on dogmatic authority also discredit almost the entirety of the DSM, the "bible" of psychiatry. The "validity" checking of DSM diagnostic criteria consists of having a few psychiatrists getting some consistent diagnoses, not most or all, of simplistic case examples. Failure rates are high. Nobody can even agree on what depression is.
So if ME does not exist, based on any tangible argument I have heard, then neither does depression, anxiety, etc. There goes psychiatry."
If you want to claim that ME does not exist, all the arguments that are used that do not rely on dogmatic authority also discredit almost the entirety of the DSM, the "bible" of psychiatry. The "validity" checking of DSM diagnostic criteria consists of having a few psychiatrists getting some consistent diagnoses, not most or all, of simplistic case examples. Failure rates are high. Nobody can even agree on what depression is.
So if ME does not exist, based on any tangible argument I have heard, then neither does depression, anxiety, etc. There goes psychiatry."
A.B.
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At least this commenter was honest and openly said what many of them secretly believe.
alex3619
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"CFS, rather than ME, is usually defined as including a loss of either substantial functional capacity or more than half a person's usual functional capacity. Many patients are very fit, and some are even athletes, so they can be highly active with mild CFS compared to a normal sedentary person. Exercise does not help these people recover.
No study exists using objective evidence for an outcome marker that shows exercise can lead to recovery or even substantial improvement. The PACE trial, as discussed in the article, shows no benefit at two and a half years from exercise compared to any of the control arms. Indeed, if you reformulate the data it shows these patients are worse off, though perhaps not significantly worse off. We also know from a previous PACE paper that all this graded exercise does not result in an improvement in fitness.
Three government reports of CBT/GET used in clinical practice, in Holland and Belgium, show graded exercise does not work. One of these had more patients than the PACE trial."
No study exists using objective evidence for an outcome marker that shows exercise can lead to recovery or even substantial improvement. The PACE trial, as discussed in the article, shows no benefit at two and a half years from exercise compared to any of the control arms. Indeed, if you reformulate the data it shows these patients are worse off, though perhaps not significantly worse off. We also know from a previous PACE paper that all this graded exercise does not result in an improvement in fitness.
Three government reports of CBT/GET used in clinical practice, in Holland and Belgium, show graded exercise does not work. One of these had more patients than the PACE trial."
alex3619
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"
"Blood changes are ephemeral or absent, not repeatable or inconsistent with the problem complained about."
This comment is very out of date. One blood change which is consistent and repeatable is NK cell dysfunction. An entire arm of the innate immune system does not work right.
Another consistent and repeatable finding, though not a blood test, is the 2 day CPET protocol. There is a massive crash in energy production after activity. This is not fatigue, its a loss of ability to perform any activity, which is objectively measurable, and about 95% accurate. It does have problems though as it induces the problem in order to measure it.
It now appears that we understand why the cytokine data is often inconsistent. It turns out ME has stages, and the two stages have opposite cytokine profiles, so any study mixing the stages (which is most of them to date) will have mixed data. Averages are not useful here, you need to see a scatter plot and do a cluster analysis."
"Blood changes are ephemeral or absent, not repeatable or inconsistent with the problem complained about."
This comment is very out of date. One blood change which is consistent and repeatable is NK cell dysfunction. An entire arm of the innate immune system does not work right.
Another consistent and repeatable finding, though not a blood test, is the 2 day CPET protocol. There is a massive crash in energy production after activity. This is not fatigue, its a loss of ability to perform any activity, which is objectively measurable, and about 95% accurate. It does have problems though as it induces the problem in order to measure it.
It now appears that we understand why the cytokine data is often inconsistent. It turns out ME has stages, and the two stages have opposite cytokine profiles, so any study mixing the stages (which is most of them to date) will have mixed data. Averages are not useful here, you need to see a scatter plot and do a cluster analysis."
Kati
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Thank you so much @charles shepherd for your persistence. This was a great article.
Ellie_Finesse
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Fantastic article, thank you @charles shepherd 
Tom Kindlon
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Tom Kindlon
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Might not have been your error. See my last post.
Tom Kindlon
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If I try to share from Facebook, it says:
Somebody else got this too.
Somebody else got this too.
Kati
Patient in training
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Interesting. Higher powers at play? Not Science Media Center approved?
(Dripping sarcasm, of course. i do not abide by conspiracy theory, never
)