The IOM clinician's guide is out

[Dolphin]

What were your symptoms for the first few years?

The most prominent was muscle pain. Sports made it worse but kept trying to follow advice to do a little/some exercise. I had over 100 physiotherapy (=physical therapy) appointments as I kept developing strains of one sort or another.

Some fatigue.

Cognitive problems (memory not as good especially for some types of things e.g. learning-by-rote e.g. poems, quotes in literature; but also an increase in clerical errors when solving mathematical problems)

Some unrefreshing sleep and related (some difficulty getting to sleep - needed a long-wind down period and still had more difficulty than peers).

I vaguely noticed that sometimes when I was standing my concentration would not be as good but only really noticed that looking back (or perhaps I would have said it if a clinician had asked me).

I noticed that if I got excited, it took me a while to fully calm down.

 

[Nielk]

Some fatigue.

When you say some fatigue, would you have described it as"

There is sufficient evidence that fatigue in ME/CFS (SEID) is profound, not the result of ongoing excessive exertion, and not substantially alleviated by rest. This fatigue must be accompanied by a substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities and persist for more than 6 months. Fatigue, and particularly the impact of illness on function, should be assessed in making a diagnosis of ME/CFS (SEID).

?

 

[Dolphin]

When you say some fatigue, would you have described it as"

There is sufficient evidence that fatigue in ME/CFS (SEID) is profound, not the result of ongoing excessive exertion, and not substantially alleviated by rest. This fatigue must be accompanied by a substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities and persist for more than 6 months. Fatigue, and particularly the impact of illness on function, should be assessed in making a diagnosis of ME/CFS (SEID).

?

Don't know. I was more focused on my muscle problems.
I was previously very athletic playing lots of sports competitively so there was large reduction in the level of activities I could do. I basically had to become a bit of a hermit to try to keep up with my studies and still by around 9pm, I was invariably really tired, starting to make lots of clerical errors with maths problems and really struggling to finish my homework. A lot of nights I had to skip some types of homework and hope I wasn't caught. So maybe/maybe not - depends on how I would have been asked.

I had sort of been convinced by the professionals I had seen that my problems were down to not exercising (I built on what they had said - it seemed plausible to me as I was so different to when I had exercised) that I didn't focus on my fatigue that much and instead focused on my muscle problems which were stopping me exercise. It seemed to me that my symptoms could be down to deconditioning and if I could just get back to exercising, all would be ok.

 

[Jonathan Edwards]

.
IOM SEID:
'memory impairments, attention deficits, and impaired psychomotor function'


Sorry its from Wikipedia - I am sure there are more erudite sources for definition of psychomotor impairment.
http://en.wikipedia.org/wiki/Psychomotor_retardation

'Psychomotor retardation (also known as "psychomotor impairment" or "motormental retardation") involves a slowing-down of thought and a reduction of physical movements in an individual. Psychomotor retardation can cause a visible slowing of physical and emotional reactions, including speech and affect. This is most-commonly seen in people with major depression and in the depressed phase of bipolar disorder;'.

It's possible that Wikipedia is right and it is most often seen in major depression and bipolar disorder, but the same terms are commonly used to described symptoms observed in patients with motor neuron disease, multiple sclerosis, Parkinson's disease and huntington's disease, among others.

I think the mistake is simply in the Wikipedia article suggesting that psychomotor impairment is a synonym for psychomotor retardation. Psychomotor retardation is a very specific sign seen in organic depression in which the patient not only thinks slowly but behaves slowly - it is almost like Parkinson's disease. 'Impaired psychomotor function' has nothing to do with that as far as i can see. It means having brain fog, memory slips, etc etc but as far as I know in ME that is never associated with the slow behavioural signs of organic depression.

 

[Jonathan Edwards]

Not really ... the likely explanation is that ME/SEID is triggered by an infection, but is not directly caused by the infection. Hence the actual cause is probably something else, such as a genetic immune dysfunction, or multiple interacting factors, such as other prior infections or toxic exposure.

Though a doctor reading the document isn't going to understand it ... so again, the wording needs tweaking.

I understood it ... but then I'm not a doctor any more I guess!

 

[Cheshire]

it is almost like Parkinson's disease. 'Impaired psychomotor function' has nothing to do with that as far as i can see. It means having brain fog, memory slips, etc etc but as far as I know in ME that is never associated with the slow behavioural signs of organic depression.

There's a thread about "slowliness"
http://forums.phoenixrising.me/index.php?threads/can-you-run-move-quickly.26738/

When I overdo, I become very slow. It's like being 90. My GP said it looked like Parkinson's disease.

 

[Valentijn]

I understood it ... but then I'm not a doctor any more I guess!

Well, I don't think doctors who are ME/SEID n00bs will understand that bit (or benefit from it)

 

[SOC]

Quoted from IOM report p. 142 on pain -

Are severe ME patients adequately represented in the results of the report and the criteria?

I doubt it, since very little research has been done on severe patients.

Similarly, the most mildly affected are probably also not represented in the research because they never seek specialist care. I suspect many of us were mildly affected long before the crash from which we didn't recover that we consider to be the beginning of ME for us. We just didn't know we were sick at the time, just like HIV positive patients didn't know they were sick until they progressed to full-blown AIDS.

The IOM was working from the database they had, which we all -- including the IOM committee -- know is woefully inadequate. They did the best they could with the evidence that was available and made a strong case for the need for vastly more research funding to clarify all these issues.

There is practically nothing we can say for sure about all patients with this disease because we don't really have any idea who we all are for certain. Again, the history of HIV may be relevant. In the early days of research they thought all people with the illness had immune dysfunction and multiple pathogens. It wasn't until they discovered the HIV retrovirus that they realized that the majority of the patients were not even on their radar because those patients appeared relatively healthy and didn't have the supposed key features of the illness. The entire definition of the illness had to be changed.

Until we have much more, much better research, we are really just guessing at what this disease involves.

 

[Kati]

I doubt it, since very little research has been done on severe patients.

Similarly, the most mildly affected are probably also not represented in the research because they never seek specialist care. I suspect many of us were mildly affected long before the crash from which we didn't recover that we consider to be the beginning of ME for us. We just didn't know we were sick at the time, just like HIV positive patients didn't know they were sick until they progressed to full-blown AIDS.

The IOM was working from the database they had, which we all -- including the IOM committee -- know is woefully inadequate. They did the best they could with the evidence that was available and made a strong case for the need for vastly more research funding to clarify all these issues.

There is practically nothing we can say for sure about all patients with this disease because we don't really have any idea who we all are for certain. Again, the history of HIV may be relevant. In the early days of research they thought all people with the illness had immune dysfunction and multiple pathogens. It wasn't until they discovered the HIV retrovirus that they realized that the majority of the patients were not even on their radar because those patients appeared relatively healthy and didn't have the supposed key features of the illness. The entire definition of the illness had to be changed.

Until we have much more, much better research, we are really just guessing at what this disease involves.

I much agree with you @SOC and I would like to add that our experts who see mostly patients with this disease (whatever you want to call it) have a knowledge that we do not necessarily have, even if we each know what is happening in our own bodies. We have to trust they have our best interest in mind. Dr Klimas made a most excellent presentation yesterday about that knowledge and 'the big picture'

What Drs Montoya, Bateman and Klimas have been saying is we need recognition at the federal level, we need funding. no money, no research, no clinical trials, no better care than what we currently have.

Instead of focusing on the inadequacies of clinical definitions and opposing the work of very reputable IOM, we need to ask for research funding so our experts can work at their best capacities

 

[SOC]

I had sort of been convinced by the professionals I had seen that my problems were down to not exercising (I built on what they had said - it seemed plausible to me as I was so different to when I had exercised) that I didn't focus on my fatigue that much and instead focused on my muscle problems which were stopping me exercise. It seemed to me that my symptoms could be down to deconditioning and if I could just get back to exercising, all would be ok.

I was in a similar state for years before the viral illness that I see as the beginning of ME for me. I had convinced myself (or my GP convinced me) that I was just "out of shape" and that was why physical activity was difficult, I felt tired a lot, and had no stamina. I kept trying to exercise my way out of it -- to no avail. I had muscle aches with exercise (not normal activities), but I associated it with muscle pain from exercising out of shape muscles. I suppose I was in some sort of denial (or maybe just confusion because it made no sense) because if I was only deconditioned, the exercise should have helped and I wouldn't have stayed in that state for years.

 

[Jonathan Edwards]

There's a thread about "slowliness"
http://forums.phoenixrising.me/index.php?threads/can-you-run-move-quickly.26738/

When I overdo, I become very slow. It's like being 90. My GP said it looked like Parkinson's disease.

Yes, but I do think that is different - I assume it is mostly about body movement. Psychomotor retardation produces a strange change in the way the eyes move and the way words are said. My wife had it when she was ill - it is as if the person's spirit has gone into slow motion. In fact if you talk to someone with Parkinson's you realise that inside they are not slow - they are desperately trying to be at normal speed. In organic depression there isn't really even any trying - not really a person in fact.

 

[Bob]

Should not criteria for disease describe the disease when experienced at full force?

I don't think that would be appropriate for a clinical criteria, which need to identify patients whatever the severity of their illness. It seems to be quite common for some/many of us to develop new symptoms, or more severe symptoms, after having the illness for some time. But I do agree with your proposal that the CCC/ICC should be used alongside the broader IOM criteria.

 

[Marco]

There's a thread about "slowliness"
http://forums.phoenixrising.me/index.php?threads/can-you-run-move-quickly.26738/

When I overdo, I become very slow. It's like being 90. My GP said it looked like Parkinson's disease.

Me too. Slow as in dead stop. Having to think about how to move one foot in front of the other does seem 'slow'.

 

[Marco]

Yes, but I do think that is different - I assume it is mostly about body movement. Psychomotor retardation produces a strange change in the way the eyes move and the way words are said. My wife had it when she was ill - it is as if the person's spirit has gone into slow motion. In fact if you talk to someone with Parkinson's you realise that inside they are not slow - they are desperately trying to be at normal speed. In organic depression there isn't really even any trying - not really a person in fact.

Funnily enough (or not) Jonathan that reminds of me of my last GP appointment when I had to wait for an hour plus due to delays. Being in France I started off in my best French (my GP speaks some English but I accept that its not a good idea to give out medical advice in a language you're not fluent in) but after the wait and a few minutes of the exertion of trying to speak French my speech slowed right down and I had to resort to mumbling in English and get up and stumble around. I did know what I wanted to say (in either language) just couldn't get it out.

 

[halcyon]

Not really ... the likely explanation is that ME/SEID is triggered by an infection, but is not directly caused by the infection. Hence the actual cause is probably something else, such as a genetic immune dysfunction, or multiple interacting factors, such as other prior infections or toxic exposure.

Though a doctor reading the document isn't going to understand it ... so again, the wording needs tweaking.

I kind of assumed that's what they were going for after reading it a few more times, but I still don't like the wording. I also wish they would have said "insufficient research" instead of "insufficient evidence" because the former is much closer to the truth.

 

[Iquitos]

I believe that neurological symptoms are being specifically referenced, rather than as a group. Cognitive dysfunction is obviously neurological, and OI as well. Sleep dysfunction likely is neurological too. Other common neurological symptoms in ME/SEID are most likely downstream effects of these problems - such as temperature disregulation being commonly involved with OI.

Muscle twitches aren't mentioned, but since those are often helped a lot with magnesium or potassium, that might indicate that those are a muscular problem, not neurological. Ataxia might also be a down-stream effect of OI, though I'm not sure that's common enough to be included in any event - I have to be in pretty bad shape to start wobbling and lurching, anyhow.

Which common neurological symptoms do you feel have been omitted?

I didn't "wobble and lurch" for the first 20 years but in the last 10 years that has become one of my most severe symptoms, especially in the last 4-5 years. And it's progressing.

 

[user9876]

I understood it ... but then I'm not a doctor any more I guess!

The question is whether a typical GP would understand it not a top professor.

I would actually say the question is if a typical GP with typical time constraints would understand enough to follow the guidelines. I would have thought testing should an essential part of usability testing for clinical guidelines.

 

[Dolphin]

The question is whether a typical GP would understand it not a top professor.

I would actually say the question is if a typical GP with typical time constraints would understand enough to follow the guidelines. I would have thought testing should an essential part of usability testing for clinical guidelines.

In terms of time, I have to wonder about some other criteria. I was involved in circulating the full Canadian criteria around Irish GPs. But it has dozens of questions. It would be very hard for a busy GP to remember them all. And it would be very time-consuming to ask a patient all the questions. It would probably only work if a doctor gave a patient the ticksheet to fill in. Again this would be time-consuming unless they were sent away to the waiting room and I'm not sure how many GPs do this. So shorter criteria can be an advantage.

 

[alex3619]

The most prominent was muscle pain.

Hi @Dolphin, your list of early symptoms closely resembles mine. I only missed out on a fibro diagnosis because of a lack of sufficient tender points which were required for the definition at the time. With pacing, over time, my muscle and joint pain declined, but as my ME (SEID) has progressed the cognitive and PEM issues have worsened, and my sleep issues have progressed till at times they are worse than non 24 hour circadian dysfunction.

My functional capacity was severely reduced though.

The ME definitions, even the CFS definitions, and I think now SEID, will miss subclinical cases that may later progress to much worse cases. None of these definitions can replace some good biomarkers.

 

[Never Give Up]

Thank you for alerting us to the posting of the new Report Guide for Clinicians, NeilK.

I like it. It's simple and clear I think it will enable non-bigoted physicians to easily recognize and diagnose ME/CFS/SEID- that is a major step. The bigoted ones will come around when there is sufficient biological evidence to convince even the most hardened practitioners.

And, they are not saying you could diagnose this disease, they are saying you should diagnose this disease if the criteria are met

The new name is weird, but it "captures a central characteristic of the disease—the fact that exertion of any sort (physical, cognitive, or emotional)—can adversely affect patients in multiple organ systems", and in doing so, reinforces the concepts put forth in the report.

I am hopeful that they will lead to better, more respectful, and compassionate care for my son, and every person sick with SEID, and will bring us one step closer to better research funding as the numbers of diagnosed patients bring more pressure to bear.