Response to article re PACE

[Aurator]

By making this statement, it in no way makes any statement about the patient with CFS. They aren't automatically not sick just because they don't match the ME definition.

I'm sorry to see the controversy this topic arouses, halcyon, and I don't want to be drawn into the wider debate, but I feel I should reiterate the point I was trying to make in my earlier post, which is that the reason why many ME/CFS patients today in the UK don't get a diagnosis of ME (but rather CFS) has nothing to do with their matching or not matching the ME definition; it is entirely to do with the terminology that happens to have been decided on, rightly or wrongly, by the NHS clinic they happen to have been referred to for a diagnosis.

 

[halcyon]

I'm sorry to see the controversy this topic arouses, halcyon, and I don't want to be drawn into the wider debate, but I feel I should reiterate the point I was trying to make in my earlier post, which is that the reason why many ME/CFS patients today in the UK don't get a diagnosis of ME (but rather CFS) has nothing to do with their matching or not matching the ME definition; it is entirely to do with the terminology that happens to have been decided on, rightly or wrongly, by the NHS clinic they happen to have been referred to for a diagnosis.

I totally understand. It's a result of the successful conflation of the two, even though NICE themselves (and the IOM, and the CDC) recognize that the descriptions of the diseases don't match up. For that reason they had to settle on 'CFS/ME', and then the /ME just ends up being dropped in practice.

 

[Aurator]

It's a result of the successful conflation of the two, even though NICE themselves (and the IOM, and the CDC) recognize that the descriptions of the diseases don't match up. For that reason they had to settle on 'CFS/ME', and then the /ME just ends up being dropped in practice.

Yes, conflation, in more senses than one, is surely what all of us have been victims of. However, I believe SOC's point about needing to work together while our knowledge of the diseases that currently come under the ME/CFS umbrella is so imperfect is also very valid, particularly now when we can see promising changes afoot..

 

[TiredSam]

@EllenGB loved your first few posts on this thread, but I'm afraid you lost me with the following:

Pacing should be spontaneous.

I thought the whole point of pacing was because spontaneously reacting to symptoms means that you are often reacting 24 hours too late, so it's better to monitor, plan, and define limits in advance. That's the way I've done it and it's helped enormously.

Heart monitoring? NO!!!!! Your body will tell you when you've gone too far (your brain might not so you need a kitchen timer for computer work). Heart monitoring is for those who don't realise they feel sick, ill, weak, yuk, tired. Your heart can work well while you feel like death. (I had 24 hour monitoring).

My body doesn't tell me when I've gone too far until it's too late. I found heart monitoring very useful, for example it has taught me what an appropriate walking speed is (much slower than I thought to keep my HR under 104 bpm, if I walk faster than that for 2 minutes or more it can put me in bed for the next few days).

And I still believe that ME is a subset of CFS. It's more neurological. People are calmer, less aggressive.

Seriously? Calmer and less aggressive than who? The general population? ME patients before they had ME? Surely you don't mean other CFS patients?

I studied ME and am not interested in chronic fatigue and PEM. All to vague.

That's a shame. I've got the thing with PEM and fatigue, and it doesn't feel vague at all to me. Maybe your understanding / knowledge of it is vague. I've found exchanging views and information with others on PR who share my symptoms, or similar symptoms, or more severe symptoms, very helpful.

And on another subject entirely:

The connection is the other way around, of course, but if you are OCD about deconditioning etc, you won't respond to such suggestions.

Looks like an unprofessional use of the term "OCD" by someone who should know better? It's been discussed on another thread.

 

[halcyon]

So you're saying it's unfortunate that all those advocates didn't get behind your specific subgroup of patients?

What I said is right there. I said "more of" not all. I'm not going to bother to reply to the rest because it's clearly a straw man built out of things I never said.

 

[EllenGB]

Evidence indicates that the ICC are flawed also. the concept of muscle weakness and delayed recovery after minimal exertion was a key symptom also described by others e.g. Dowsett, Parish and so on. Indeed, Parish assessed it (Paul et al 1999). It's true that evidence must be tested and ideas amended accordingly but in the case of ME, there's no evidence that Ramsay's description is far off the mark. Does it matter if you lash out against psychologists rather than psychiatrists or anyone else who shares a view? Yes. It's like blaming all your ills on the blacks, gays etc. It's a sign of anger and misinformation.

You claimed that CBT model has been promoted by a lot of doctors

Not just doctors but also nurses, social workers who write books, historians (Showalter, Shorter) etc.

What are they then, psychiatrists? What difference does it make whether they are psychologists? They subscribe to the biopsychosocial philosophy which is psychology-based. The psychogenic hypothesis is a psychology hypothesis.

According to whom? I believe you are in the minority on that... unless you count those who don't consider ME a physiological illness at all.

Okay, so you're basically saying that anything that doesn't fit your personal definition of ME doesn't count for anything. At least you're clear about it.

Isn't that a touch unfair? I am a ME specialist and my views are about ME. Not many others from the Ramsay period post here. So I'm not just in a minority, I think I'm pretty much the only scientist focused on ME. Is that a problem? A different view? I'm not arguing that others are not entitled to their views.

So you are a retired ME specialist? What was your field of study... neurology? Immunology? Infectious disease? Cardiology? Internal medicine? Psychology? Have you published about ME? Would you be willing to link to some of your published work?

Oh dear. Would someone else like to inform etc. But most won't know I started in endocrinology, focusing on hormonal changes in the menstrual cycle. Co-authored gynaecology textbook. How did I get into ME? Because I saw it, doctors were not diagnosing it, so I thought I'd create awareness so they could diagnose it. Firs tin Holland, then in the UK. Helped get AFME started blah blah. Work is often cited by Jason.

 

[Valentijn]

Heart monitoring? NO!!!!! Your body will tell you when you've gone too far (your brain might not so you need a kitchen timer for computer work). Heart monitoring is for those who don't realise they feel sick, ill, weak, yuk, tired. Your heart can work well while you feel like death. (I had 24 hour monitoring).

Heart rate monitoring is a non-literal life-saver for many ME patients. While many of us do often start to feel quite bad during or immediately after exertion, sometimes we don't, and sometimes we don't start to feel bad until we've gone to far and crash badly the following day. The immediate symptoms may be more indicative of Orthostatic Intolerance than PEM, and don't seem well-enough connected to triggering a crash to rely on those symptoms to avoid crashes.

I use a heart rate monitor as a pacing tool. In addition to symptoms and previous experience, it's a way to indicate that I've gone too far. I thought I was pacing as well as I could, but a heart rate monitor showed that my heart rate was getting too high doing basic tasks: walking slowly up 1 flight of stairs, bathing/showering, cooking, gardening, vacuuming, etc. I was able to use that information to restructure some of those activities, and pretty much had to abandon some others due to the lack of having a less strenuous way to do them. Now that I know how I react to certain activities, I can pace them better, such as doing 5 minutes of cooking activities every 30-60 minutes in my slow cooker. So I just use the monitor now for new or especially intensive activities, like traveling, shopping (in a wheelchair/scooter), or bathing.

For example, I felt awful after going upstairs, so would lie down until I felt a bit better before starting a shower. Similar with resting after a shower. But with a heart rate monitor, I realized my heart rate was getting up to 140-150 very frequently just washing myself, raising my arms over my head to wash my hair, drying myself, etc, even while sitting down and resting if I felt tired. And I usually would start to feel a little better after resting before my heart rate had properly recovered, so would resume activities too quickly. But without a heart rate monitor, I was pretty much inevitably crashing after each shower.

So now I rest every time my heart rate hits 100, so it usually stops rising before 110, and then start scrubbing again when I'm back down to 90 or under. In this way I can (slowly) shower and not crash afterward. Though from the "experience/planning" aspect, it's still going to be my only "big" activity for the day.

Basically heart rate monitoring has helped me avoid crashes almost completely, and to be a lot more consistent regarding my functionality. Which is nice, because then it's a lot easier to make plans (such as cooking dinner versus ordering delivery), and to now accomplish some other pleasant activities like cooking coffee for myself and my fiance, and usually cleaning the machine in the afternoon as well.

I almost never crash unexpectedly now. Which means I almost never crash, except in the very rare situation where I've over-committed to something. Even if my tolerance for activity changes from day to day, my heart rate monitor lets me see that pretty well. So if my heart rate is staying at 100 just from sitting up with my feet up, then no shower. And some days it'll get high too easily even if my resting heart rate is decent, so the shower might be a lot slower and less thorough than on other days. But the heart rate monitor is a key player in getting my through those activities without triggering a crash.

Who are the BPS brigade?

Therapists and doctors who profess belief in a bio-psycho-social framework for disease, yet curiously only treat psychological aspects. Basically the "polite" way to explain supposed psychosomatic disorders in a manner which confuses instead of offends unaware patients.

 

[EllenGB]

@EllenGB loved your first few posts on this thread, but I'm afraid you lost me with the following:



I thought the whole point of pacing was because spontaneously reacting to symptoms means that you are often reacting 24 hours too late, so it's better to monitor, plan, and define limits in advance. That's the way I've done it and it's helped enormously.

Yes, do plan, knowing roughly what you are capable of. But when you have begun an activity and your legs start to feel weak, or you feel faint, then stop. Don't push on.



My body doesn't tell me when I've gone too far until it's too late. I found heart monitoring very useful, for example it has taught me what an appropriate walking speed is (much slower than I thought to keep my HR under 104 bpm, if I walk faster than that for 2 minutes or more it can put me in bed for the next few days).

That HR is too high. that's something that needs investigating. Anything above 80 bpm is too high and needs a thorough check.

Seriously? Calmer and less aggressive than who? The general population? ME patients before they had ME? Surely you don't mean other CFS patients?

See a few posts here.

That's a shame. I've got the thing with PEM and fatigue, and it doesn't feel vague at all to me. Maybe your understanding / knowledge of it is vague. I've found exchanging views and information with others on PR who share my symptoms, or similar symptoms, or more severe symptoms, very helpful.

How do we measure malaise? How do we measure fatigue? It's subjective. My fatigue may not feel like fatigue of someone who has just run a marathon. Lots of people feel tired for all sorts of reasons. ME and CFS are not the most common.

And on another subject entirely:



Looks like an unprofessional use of the term "OCD" by someone who should know better? It's been discussed on another thread.

That's my reaction after 30 years or so of reading work by Wessely and White on maladaptive beliefs. they tend to repeat, repeat, repeat, repeat and stick to a view, even long after other researchers have shown it to be wrong. Repeat, repeat, repeat. True, it doesn't cause them distress, but it does cause distress in their colleagues (and patients who read their simplistic explanation). I really do see an obsession there, I'm afraid. But yes, it's not a diagnosis, but a short hand description to note something not quite right. If you had to read all their articles you might see the obsession with one limited concept. But unlike patients, and this is why I retract my description, it does not cause them distress. I've misused a psychiatric diagnosis when I should not have done. Just shows I'm human and get a little exasperated with the CBT fanclub views. thanks for pointing it out. Apologies to all. Personal views here. I'm retired.

The insertions have gone a little astray. I had no problems in the past but now I do. Makes it hard to read my bits.

 

[Undisclosed]

This thread is closed for moderation purposes.

 

[Undisclosed]

This thread is now open again. Any posts with rule breaches/personal attacks have been removed.

The topic of this thread is EllenGB's response to an article in the magazine published by the UK charity MCS-Aware.

The thread did go massively off-topic. Let's get it back on topic, so please keep your posts limited to comments related to the topic of this thread. Any further off-topic comments regarding ME versus CFS will be removed (that can be discussed elsewhere). Any further personal attacks will result in being banned from this thread.

Thank you.