Response to article re PACE

[EllenGB]

I don't know about CFS but in ME, there is no significant heart abnormality that is picked up by monitoring. If there were, the experts would have written about it since 1955 and they never did. It comes from CFS specialists, not the ME/PVFS group. If I measure BP, pulse etc, it goes up and down but a lot of that is for other reasons including stress, lack of fitness etc. Allergies can do it. I recall feeling very bad but the monitor was fine. CFS is a broader concept and I dare say, includes patients with other disorders that might be reflected in heart changes. I assume that you've been thoroughly checked by a cardiologist. What you write is something I don't recognise.

That's the joy of science. ME and CFS are not the same and there are lots of reasons for all sorts of abnormalities resulting in symptoms like fatigue, sore throat, sleep disturbances, memory problems etc, everything that makes up CFS. My views relate to ME/PVFS only. CFS to me is rather meaningless. It covers too many ills. I'm not changing views to be popular. I change views if there's decent evidence. And I still believe that ME is a subset of CFS. It's more neurological. People are calmer, less aggressive. Same as patients with cancer and MS.

And the BPS brigade was ? BPS here is the British Psychological Society. I am not aware there's a brigade and I've been a member for over 30 years. So what is it? If rude, don't tell me.

 

[EllenGB]

Just checked. Tachycardia can be treated. May be related to other abnormalities e.g. thyroid etc. Patients must not assume that every symptom is due to ME. Lumps, blood, tachycardia; all need investigation. I recall how one expert who had studied low blood volume and OI advised us to drink more and wear certain stockings. Also check vitamin D.

 

[mango]

redefining pacing to act more like GET.

yes, i find this hugely problematic. so often nowadays it is called "pacing" or something very similar ("pacing up", "activity pacing", "time/quota/etc contingent pacing", etc), but, as i understand it, those aren't pacing at all but just variations of GET...

one recent example is Activity Pacing Self-Management in CFS by Nijs et al.

i'd love to hear your thoughts on this, @EllenGB, please. is there something we can do to counteract this muddying of the waters?

 

[mango]

Rationale for stopping patients from resting when they feel unwell is based on an old hypothesis linked to operant conditioning and developed in relation to another condition significantly different from ME. It is now regarded as invalid. It's also sexist.

could you please expand on this? why is it sexist? (the only thing that comes to mind is 'hysteria'..?) i'm genuinely interested, would love to know more.

(i'm sorry if it's a silly question, maybe i'm missing something very obvious?)

 

[EllenGB]

Forget Nijs. He combines pacing and GET. Don't understand and have seen no evidence that's it's superior to simple pacing. Activity Pacing??? Means little to me. What else do you pace? (Outside of cardiology).

Can't expand on things I've already covered as I'm pacing.

I assume BPS brigade was something rather rude.

 

[SOC]

I don't know about CFS but in ME, there is no significant heart abnormality that is picked up by monitoring. If there were, the experts would have written about it since 1955 and they never did.

Have you read the work by Snell, et al? Are you aware of the results of 2-day CPET testing? PWME typically have a much lower anaerobic threshold (AT) than healthy people. We exceed our AT doing ordinary tasks like showering or walking across a room. Healthy people exceed their AT with heavy aerobic exercise. That is a very distinct abnormality.

Heart rate monitoring is used to help the patient avoid continuously exceeding his AT and thereby overtaxing his body resulting in PEM. PEM is a delayed reaction, so you do NOT know simply by how you feel in the moment whether you have started a PEM response.

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

And the BPS brigade was ? BPS here is the British Psychological Society. I am not aware there's a brigade and I've been a member for over 30 years. So what is it? If rude, don't tell me.

The BPS brigade is the biopsychosocial branch of psychologists. They are the people like Wesseley, Crawley, and White who contend ME is a psychogenic condition.

 

[EllenGB]

None of the people you list are psychologists. Snell does not study ME and doesn't always include relevant variables. ME is not CFS. Problem is muscle weakness possibly related to mitochondrial abnormalities plus involvement of CNS and circulation. IN ME, PEM is not a key symptom. There is a worsening of all symptoms, not just malaise. And you notice fairly quickly. then it gets worse over the next 24 hours or so. So you not describing ME as Ramsay and others observed it for many, many years. I studied ME and am not interested in chronic fatigue and PEM. All to vague.

 

[Artstu]

Does anyone actually get an ME diagnosis in the UK?

 

[Aurator]

Does anyone actually get an ME diagnosis in the UK?

In the several NHS foundation trusts local to me that I have experience of CFS is the only diagnosis given out; the term ME is not used and has no currency in medical circles. So, whether you believe ME and CFS are the same or different things and whether you refer to yourself as having ME or CFS, your condition is unlikely to be referred to as anything other than CFS by medical staff, and you will not receive a formal diagnosis of ME however much you insist on one.

A patient is perfectly at liberty to insist they have ME and not CFS and that the two demand different treatments, but the treatment (such as it is) that you will get offered will be no different whatever you say.

 

[halcyon]

but in ME, there is no significant heart abnormality that is picked up by monitoring. If there were, the experts would have written about it since 1955 and they never did.

Ramsay wrote of orthostatic tachycardia, which I would consider a significant abnormality due to how completely disabling it is.

 

[Artstu]

@Aurator thanks, this thread was interesting until it suddenly veered off course. now I'm left feeling bewildered.

 

[EllenGB]

Lots. But not using the ME criteria. The veterans with ME were diagnosed correctly though. In ten years time when everyone has stopped reinventing the wheel, the CFS criteria will match the ME ones. The trend is going that way. In ten years time, ME will be ME and CFS probably won't exist anymore.

 

[EllenGB]

Ramsay wrote of orthostatic tachycardia, which I would consider a significant abnormality due to how completely disabling it is.

Source?

 

[EllenGB]

In the several NHS foundation trusts local to me that I have experience of CFS is the only diagnosis given out; the term ME is not used and has no currency in medical circles. So, whether you believe ME and CFS are the same or different things and whether you refer to yourself as having ME or CFS, your condition is unlikely to be referred to as anything other than CFS by medical staff, and you will not receive a formal diagnosis of ME however much you insist on one.

A patient is perfectly at liberty to insist they have ME and not CFS and that the two demand different treatments, but the treatment (such as it is) that you will get offered will be no different whatever you say.

That's how I see it too. There are no ME specialists left working. We've all retired. I'm just watching the chaos from the sidelines now. But I see the trend in the lit back towards ME which is positive.

 

[halcyon]

Source?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425324/pdf/postmedj00263-0015.pdf

Evidence of involvement of the sympathetic nervous system or actual hypothalamic damage was to be found in most cases. This often took the form of orthostatic tachycardia (which Leon-S6tomayor (1969) states does not occur in cases of hysteria)...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425322/pdf/postmedj00263-0008.pdf

(4) involvement of the autonomic nervous system resulting in orthostatic tachycardia, coldness of the extremities, episodes of sweating or profound pallor, sluggish pupillary responses, constipation and frequency of micturition, possibly as the result of a hypothalamic disturbance;

The latter isn't Ramsay but I'm sure you'll agree that Parish knew what he was talking about. Ramsay also mentions it on page 31 of his monograph.

 

[EllenGB]

Ah yes. Pots. Comes under either brain or circulation I suppose. Increase of about 30 beats pm. When upright. Yep. I remember. I worked for Dr Parish for many years. But 160 is a touch high. You can add paper in Pulse to the refs.

 

[halcyon]

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.

According to Melvin Ramsay. PEM is not a cardinal feature of the disease as he described it. The pathological effects of minor exertion on muscle are the cardinal feature according to him.

As far as I understand, the concept of PEM comes from the Fukuda CFS definition. It's unclear to me why so called ME advocates then are so keen to incorporate it as the key feature of "ME", completely ignoring the historic descriptions of the disease.

 

[SOC]

According to Melvin Ramsay. PEM is not a cardinal feature of the disease as he described it. The pathological effects of minor exertion on muscle are the cardinal feature according to him.

As far as I understand, the concept of PEM comes from the Fukuda CFS definition. It's unclear to me why so called ME advocates then are so keen to incorporate it as the key feature of "ME", completely ignoring the historic descriptions of the disease.

Perhaps because knowledge does not stagnate. Much has been learned over the past 50+ years. Historic descriptions of very few diseases are 100% accurate. I doubt even Ramsay would want people to stick religiously to the best description he could make of the disease many years ago. He was intelligent enough to realize that as more researchers look at the disease in a wider variety of patients with newer technologies, there are likely to be some adjustments to his original description. The ICC is the modern best attempt to describe the illness, just as Ramsay made his best attempt all those years ago. No doubt the defintion/description will continue to change until we have a much clearer picture of ME. That's how science works.

Individuals are entitled to believe that only Ramsay's old description of ME has any validity. That does not mean that people willing to look at knowledge gained in the many years since one man looked at a small segment of the patient population are wrong. It simply means they are looking at a more extensive data set when creating their opinions.

I think we'd all be in a much more difficult place without those you call "so called ME advocates". Those advocates have helped patients make huge strides in research and in the political areas.

 

[halcyon]

Perhaps because knowledge does not stagnate.

And historical knowledge does not become invalid just because it's old. Ramsay felt strongly enough about the effects on muscle to state that ME should not be diagnosed if that symptom is not present. He and those that worked with him were pretty clear that they disagreed with the efforts to redefine the illness into a broader description, the culmination of which being the CCC and ICC, which are irrevocably tainted with CFS concepts.

Most here aren't willing to entertain discussion about the differences between ME and CFS, or between ME and CCC/ICC "ME", and those that bring it up are often told to "stop fighting about the name."

 

[halcyon]

And when I say "so-called ME advocates", the emphasis is on "so-called ME" not "so-called advocates." I recognize that there are many that have contributed a lot to recognition of the poorly understood group of symptoms that we now call ME/CFS. It's just unfortunate that more of these people didn't get behind the original description of the disease because they might have had less of a hard time due to the objective signs and symptoms that characterize Ramsay ME and the lack of emphasis on fatigue.

I don't see how the use of the name ME without use of the description that spawned the name can be anything other than an appropriation.