Search results

Judging by the response you've had, they will probably consider it a normal setback. In their narrative, this kind of thing is normal and not harm. You're supposed to keep going and overcome your erroneous belief that you have an illness that causes exertion intolerance and then you get better...

These two items on the questionnaire are the closest to PEM: "Pain increasing the day after you are active" and "Fatigue increasing the day after you are active". The latter apparently was included when patients were asked about symptoms that were missing from the questionnaire. In this study...

Exactly. Their aim is to produce a "generic functional disorder questionnaire suitable for patients with a diagnosis of IBS, FMS, and CFS". Without a comparison to similar organic conditions like multiple sclerosis and diabetes they do not know if the result might just be a questionnaire that...

It seems to be human nature to react to uncertainty about something by building a strong belief about the nature of this thing. The more uncertain something is, the stronger the belief to know the truth. The belief seems to exist mainly to neutralize the unpleasant sensation of uncertainty (and...

These geniuses then put her into an abusive, unbearable and uncontrollable situation for three years. These psychiatrists are like a caricature of a crazy psychoanalyst, with police powers.

Oh the irony. It sounds like these psychiatrists are victims of their false beliefs. Psychiatrists with false beliefs suffer from a very serious condition which can cause the death of patients. They must be kept away from patients.

@Jonathan Edwards when is the NICE hearing? The Cochrane review being delayed might have something to do with NICE.

There is a problem of patients believing all sorts of ideas about their illness. Not because of a mental illness but because they don't realize that not everything that they're reading is true. It is not so easy to distinguish what is true from what is false.

It needs to take cost, time and effort into account. A cheap and simple intervention, like adding some magnesium and salt to your water bottle every day doesn't need to produce as large effects to be worthwhile as a costly and time consuming intervention like two hours of some therapy every week.

My health permanently worsened as result. I'm not the only one. The side effects were horrific and I thought I would not survive a year. Allegedly some people are helped but I suspect that the positive outcomes are talked about much more than the negative outcomes due to human nature. I think...

@dave30th this sounds like a worthwhile idea.

I think what is needed is to beat them at the media game. They have exposed themselves with the grossly misleading articles. It would be easy to show how dishonest they are. I also wonder if collective legal action is possible.

@Jonathan Edwards can you leave a comment? Your last ones on Psychology Today were really good.

I regret ever making the foolish decision.

It is bizarre that in a situation where patients are slowly winning against profound injustice, the Guardian is happy to denigrate the very same patients.

It is frightening how care of children with poorly understod health problems is controlled by zealots that have constructed a complex belief system with approximately zero evidence behind it.

They otherwise strike me as a publication that would side with patients and good science. Why not in this case, and is there anything that could be done?

My interpretation is that the connection is the remarkable chronicity of the condition, which often occurs with a sudden switch from good to poor health. Phair isn't the first person to think that the body's attempts to maintain good health are somehow backfiring and creating poor health.

I don't think fluctuations contradict the idea of a metabolic trap. As others have said, it's not all cells that are trapped, just some. The body is extremely complex. When some parts are malfunctioning, all sorts of weird things could happen. I don't think one could say that fluctuations are...

The relapses are not from a state of normal health into a state of ill health. They are from a state of ill health into an even worse state, with slow recovery back to the previous state (at times the recovery is incomplete and the new normal is worse than before). At least that's how they are...