BMJ comments on new PACE trial data analysis

[alex3619]

When we talk of placebo and response bias etc, its worth remembering that for many of us, me included, the natural inclination is to presume we can do more until we learn we cannot. We don't have enough fear, enough caution, etc. Its not that we have too much of either. This may compound the psych methods, giving patients an even higher feeling they can do stuff than otherwise.

There are indeed people who have anxiety or depression or PTSD with ME and CFS. Then there is the rest of us. Claiming a core mechanism, including fear, is untenable unless you talk subgroups. Its also so subjective as to be always questionable.

@Esther12 is correct, I think, that this is more often about what we can do than how we feel. Its nice to feel good. Send me a gift basket, don't send me to a psych. However all the good feeling in the world does not help much if you cannot take a bath or shower, cannot go to gatherings of family and friends, and cannot even have a walk on a nice day. Then in all this we are still ignoring the extreme end ... those patients who need to be on oxygen and fed through a tube.

To me all this is not about how I feel but about tangible results. I want to DO more, not just feel better about doing much less than I want.

 

[lansbergen]

We don't have enough fear, enough caution, etc. Its not that we have too much of either.

For me that is a ME characteristic

 

[A.B.]

For me that is a ME characteristic

I refused to believe that anything serious was wrong for years. So much for false illness beliefs.

 

[alex3619]

I refused to believe that anything serious was wrong for years. So much for false illness beliefs.

You and how many others?

 

[Aurator]

Winston is one of those mediocre scientists who is lionised, honoured and quoted ad nauseam by the British establishment as is done with Wessely. Never mind whether he has any expertise in the specific subject area, he is the one who is trotted out to talk vague, patronising, platitudinous hogwash.

His successful media career may have something to do with it; he was never off the tele in the 70's and 80's, as far as I remember, and has appeared very frequently since.

Sadly, both the public and the establishment find it difficult to resist making that facile and utterly spurious connection between the degree of media exposure a person receives as an authority in a certain field and the degree to which that person actually deserves to be regarded as an authority in that field in the first place. Examples abound of TV "experts" who in the real world simply don't cut the mustard, just as examples abound of more genuine experts who happen not to cut the mustard in the world of TV and the media generally. Whose voice gets heard is, regrettably, not always decided on merit.

 

[Mij]

@A.B. I even refused to believe an ME specialist . I thought he was a bit of an "exaggerationalist"

 

[MeSci]

@A.B. I even refused to believe an ME specialist . I thought he was a bit of an "exaggerationalist"

or was 'catastrophising'?

 

[MeSci]

For me that is a ME characteristic

Yes, and I think it is because it is a character trait that makes people more likely to push themselves too hard, even when they are ill. So could be one reason why not everyone who gets a specific virus will get ME. Those who do the sensible thing and rest will be less likely to get ME. Those who refuse to slow down and rest (and also those who are not given the chance to) will be more likely to get ME. And there are probably also genetic predispositions, some of which may be directly linked to the character trait and some of which may not be.

EDITED one sentence as wasn't quite right.
EDITED again!

 

[Kati]

So could explain, for example, why not everyone who gets a specific virus will get ME. Those who do the sensible thing and rest will not get ME. Those who refuse to slow down and rest (and also those who are not given the chance to) will be more likely to get ME.

I disagree with this statement. People could have done everything possibly right and still gotten sick. I am sure there are more like me.

 

[lansbergen]

I disagree with this statement. People could have done everything possibly right and still gotten sick. I am sure there are more like me.

You were a nurse and you went to bed the first day you did not feel 100% well?

 

[MeSci]

I disagree with this statement. People could have done everything possibly right and still gotten sick. I am sure there are more like me.

That is covered by my second statement:

And there are probably also genetic predispositions, some of which may be directly linked to the character trait and some of which may not be.

but I can see I didn't word the first part quite right and will correct it. Blame ME-brain.

 

[Kati]

You were a nurse and you went to bed the first day you did not feel 100% well?

That sounds slightly accusatory. I had no choice to be in bed. In fact when I fell sick I was at work and asked my supervisor to go home. For the next 3months I followed my symptoms, and in retrospect paced as best as I could even though I didn't know about pacing.

Thing is if I return to @MeSci 'so quote, it sounds like the patient's behaviour is being blamed for being sick, and for perpetuating the illness when it is not necessarily the case.

This surprises me, especially on a patient forum.

 

[Kati]

That is covered by my second statement:


but I can see I didn't word the first part quite right and will correct it. Blame ME-brain.

All right. Phew. I got scared for a second.

 

[MeSci]

Thing is if I return to @MeSci 'so quote, it sounds like the patient's behaviour is being blamed for being sick, and for perpetuating the illness when it is not necessarily the case.

This surprises me, especially on a patient forum.

It was an error, now corrected.

 

[Kati]

It was an error, now corrected.

Yes, and I think it is because it is a character trait that makes people more likely to push themselves too hard, even when they are ill. So could explain, for example, why not everyone who gets a specific virus will get ME.

I still have problems with that. Science will determine, hopefully, that behaviour is not the culprit in explaining this particular disease, but the bio-physical insult, possibly the initial virus virulence, and the body response including gene expression, etc, and not so much patient's behavior.

I will give you an example of 2persons with non-Hodgkin's lymphoma. They will both receive the same chemo, one goes in remission, the other dies. Would you blame psychological factors or behaviors for the second person's death? No! The second person died because his/her cancer was more aggressive.

Edit to add: in the case of ME I think it would be over simplistic to blame patients' disease severity or even getting ME on behaviors (not resting enough). It could be interesting to ask the question in a poll to see what other patients think. (But then it would be biased by patients' beliefs, and not by what exactly happened)

 

[Countrygirl]

@A.B. I even refused to believe an ME specialist . I thought he was a bit of an "exaggerationalist"

Me too! For years I tried to keep teaching and over the last year would have to dart into the women's toilets to lie down to try to gain sufficient energy to climb the stairs to my classroom and the three dozen teenagers waiting to be entertained and educated. When I was eventually taken to a nursing home and was diagnosed with something I had never heard of the doctor told me that I had such evidence of nerve damage that I had a ninety percent chance of becoming paralysed if I continued to force myself to keep going and exercising. I thought he was an 'exaggerationist' too, although I knew that I was seriously ill.

I recall that I asked him to write down this impossible-sounding condition he had diagnosed me with. He put his hand in his desk drawer, pulled out a piece of paper and scribbled down my diagnosis. I finally burst into tears when he handed me the piece of paper that said 'Myalgic Encephalomyelitis' under the bold heading 'Certificate of Death'. Thirty-five years later, I now realise how apt that was.

 

[MeSci]

I still have problems with that. Science will determine, hopefully, that behaviour is not the culprit in explaining this particular disease, but the bio-physical insult, possibly the initial virus virulence, and the body response including gene expression, etc, and not so much patient's behavior.

I will give you an example of 2persons with non-Hodgkin's lymphoma. They will both receive the same chemo, one goes in remission, the other dies. Would you blame psychological factors or behaviors for the second person's death? No! The second person died because his/her cancer was more aggressive.

Edit to add: in the case of ME I think it would be over simplistic to blame patients' disease severity or even getting ME on behaviors (not resting enough). It could be interesting to ask the question in a poll to see what other patients think. (But then it would be biased by patients' beliefs, and not by what exactly happened)

It used to be usual to have a period of 'convalescence' after a significant illness. I'm sure it was based on good evidence-based knowledge - that people who push on take longer to recover, or recover less well, than those who rest until they feel better.

The body's own 'sickness response' (not a much-better term IMO than the dreadful 'sickness behaviour'), meaning the physiological response to illness, appears to be an evolutionary adaptation to make animals rest, hide away, etc., thus enabling the immune system to do its work.

So it's not the behaviour as such that can cause an illness to become permanent, rather the fact that such behaviour may make it impossible for the immune system to respond adequately.

And I am certainly not blaming patients. Don't forget - I also said 'those who are not given the chance' (to rest). This could be because they have young children or other dependents, because they desperately need to earn money, because they are not given time off, etc. In my case overexertion has been driven by financial necessity and also a traumatic life event which I dealt with by manic 'active coping', not really caring whether I harmed myself by so doing.

Yes - different strains of an infection, or cancer, etc., will also have a bearing on who recovers and who gets ME.

I have edited my offending post again!

 

[MeSci]

I recall that I asked him to write down this impossible-sounding condition he had diagnosed me. He put his hand in his desk drawer, pulled out a piece of paper and scribbled down my diagnosis. I finally burst into tears when he handed me the piece of paper that said 'Myalgic Encephalomyelitis' under the bold heading 'Certificate of Death'. Thirty-five years later, I now realise how apt that was.

Yikes! That wasn't very diplomatic...or ethical.

 

[Mij]

@Countrygirl that's a shot of reality, isn't it?

The ME specialist I saw advised me to do nothing when I started feeling better again, but never explained WHY, so I left his office thinking now he's gone off the deep end

 

[Countrygirl]

Yikes! That wasn't very diplomatic...or ethical.

He was most embarrassed and very apologetic when he realised what he had done, poor chap!