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From Our Readers: Comments & Suggestions - 10/9/13

  [ 9 votes ]   [ Discuss This Article ] • October 7, 2013

From Our Readers: Comments & Suggestions - 10/9/13

If we can't cure it, we'll pretend it doesn't exist

Re: "Allostatic overload in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)"

Doctors are extremely goal oriented. When they face a situation that they cannot resolve, they often attempt to explain it away, or shift the focus in some way that will allow them to claim that they have "succeeded", that they have made a diagnosis or treated the illness, in order to avoid saying those terrifying words..

"I don't know". And, "I do not have any medicines or treatments to make you feel better".

There is a very long history of doctors claiming that physiological illnesses were just "stress disorders" or "psychosomatic" or manifestations of depression or anxiety, to explain away their own inability to diagnose or treat the illness. History demonstrates that the diseases so often dismissed in this fashion were very real.

Yes, if you pamper someone with a horrible illness, give them a bit of hypnotherapy or a massage, spend time counselling them, they might feel a bit better, briefly. Thus, CBT receives its due. Most people do naturally feel a bit better if they get emotional support or have a chance to relax. But, it does not make the disease go away, and it does not mean the disease does not exist.

As the parent of a child with a related illness, I am HEARTILY SICK of dealing with doctors' fragile egos, and emotional crises. They need to arrive in the exam room ready to face the day, and that includes facing moments when they are NOT successful in helping their patients, without attempting to shift their burdens onto the patients, on top of what the patient is already coping with, which would probably drive a doctor to his knees if he had it dumped on him suddenly. When a doctor fails to help a patient, it may not be the doctor's fault, but IT IS NOT THE PATIENT'S FAULT, either. Blaming the patient is not the answer. Posted by: Dfwmom. July 27, 2013


What part of the word POST in POST exercise malaise does the CDC not get? 

Re: “Advocates Rebuffed: CDC Whiffs on Opportunity to Prove Reduced Exercise Capacity Present in Major Chronic Fatigue Syndrome Study” 

Another shocking decision by the CDC. Not only because again they ignored us again, but also because it shows a complete lack of understanding of one of the most basic symptoms of ME. Nothing will be accomplished until Unger and others like her are gone. Between another federal agency paying a contractor to write a new definition when we already have the Canadian and International definitions and this action by the CDC, it's no wonder so many of us believe there is a conspiracy to cover up the real issue with this illness. Posted byshewolfdc, Sep 17, 2013


Autoimmunity and Infections

Re: "The Emerging Role of Autoimmunity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/cfs)"

Autoimmunity implies the immune system specifically targets the host tissue. I am not so sure the evidence supports the autoimmune hypothesis. 

There is immune dysfunction and the immune system clearly seems to be going and going as if it is fighting infection. But I don't think it is targeting us, we are by-standers. 

"The chronic or recurrent viral infections seen in many patients with ME/cfs"

Again, the evidence does not support chronic infections in ME/CFS, we need to move on from this. That recent study looking for infections pretty much confirms this. The "hit and run" theory of infection is more plausible and more likely true. 

The study also confirmed the immune dysfunction. Advocacy groups (I'm not talking about all of them) need to stop harping on ideas that are dead and disproved. They will slow progress just like the medical community in which they criticize has in the past. Posted by: neoplus1, Oct 1, 2013


I believe first you have to have the genetic predisposition to develop ME/CFS, which is an up-regulated (strong, healthy) immune system and that there are many triggers (viruses, chemicals, vaccinations etc), which send the immune system, in some predisposed individuals, into permanent overdrive. I'm quite certain that my hyped-up immune system, that reacts to just about everything, is the culprit for the unrelenting fatigue, flu-like symptoms, insomnia and anxiety/depression I have experienced from this illness. Posted by: Laehcar, Oct 2, 2013


We have two (or three) choices, either (1) the immune system is "going and going as if it is fighting infection" but there is no infection there, which we would classify as an autoimmune condition. Or (2) the immune system is actually fighting an ongoing infection. Or (3) it is fighting an ongoing infection and there are concurrent autoimmune problems. 

For example, see Dr Konstance Knox discuss the viral onset of ME/CFS & auto-immune dysfunction. Or look at the high quality research being done by Drs Montoya, Lerner, Chia and others into ongoing viral infections in ME/CFS ( Or consider the B-cell abnormalities and the spectacular response to Rituximab in ME/CFS that has been documented by Norwegian researchers.

So we can see that the theories of auto-immune and ongoing viral infection in ME/CFS are far from "dead and disproved", these are very active and productive areas of research.

On the other hand, the "hit and run" theory is still no more than speculation at this stage: no studies have identified the body-system target that has been hit, how it was hit exactly, how the damage is not corrected by homoeostasis, nor how it continues to cause such malign symptoms. Posted by: ianbarnes Oct 5, 2013

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