The IOM clinician's guide is out

[taniaaust1]

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So, SEID. No longer Myalgic Encephalomyelitis and no longer a Neurological disease. Where have my symptoms gone?

ME still exists as the SEID diagnoses dont cover some of us..hence it cant be vanished. Sadly we will be a much smaller group if fitting SEID means you now have SEID.

 

[Valentijn]

• diagnosing/observing PEM Using two cardiopulmonary exercise tests(CPETs) separated by 24 hours, look for marked inability to reproduce maximal or anaerobic threshold measures on the second day (note that this test may induce severe exacerbation of symptoms in these patients)Big problem for many patients - what happened to 'first do no harm'?

I somewhat agree. But I think they're trying to find a balance between "don't kill the patient" and "disability is objectively provable". In the process of getting to that point of the document, it should already be very clear that exertion = bad, but I do think it would be good to have a specific caveat included within the CPET description.

 

[Valentijn]

I too, think this is a very strange - and poor - choice of words. The focus really ought to be on others, as patients know first hand how real the disease is. Perhaps they are trying to get across that we don't like the CFS label, but their wording on that isn't good.

Well, there are a lot of accounts of people getting diagnosed with CFS and believing doctors who tell them to go exercise a bit, so saying "Exertion Intolerance" instead of "Fatigue" should help with that problem. But I agree ... no need to specify that in the document, and it's a bit confusing.

 

[Valentijn]

.
So, SEID. No longer Myalgic Encephalomyelitis and no longer a Neurological disease. Where have my symptoms gone?

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?

 

[Undisclosed]

[

ummm Im shocked they've used something which had no research in in the main core of the definition. Its exactly what I'd thought when I saw that in the criteria and I really thought that wasnt from research done on ME/CFS.

@taniaaust1 If you read the report, they did provide a synopsis of what research they used to make their decision regarding sleep and it does seem that a majority of ME/CFS patients suffer from unrefreshing sleep.

They are wrong, it isnt universal at all. My case is proof of this as a severe ME person meeting both International ME criteria and the CCC, the SEID criteria due to this dont fit me well.. as long as Im not crashing too badly or crashed, I do wake up feeling refreshed. (if refreshed is based on how fatigued one feels and having waking up with less fatigue).

This part would cause some doctors to not label me with SIED say if I was given a form to fill out with these criteria on it and asked to tick a box asking if I'd suffered this in past 2 weeks. It is likely I may not have as long as I'd stayed in my limits.

They should of done better then put things which havent had any studies done on them into the core definition!! I thought this whole thing was supposed to be "evidence based" and putting things in which havent been researched doesnt make it an evidence based definition.

Under the guidelines, it seems the suggestion is that if you don't have unrefreshing sleep at least 50 percent of the time, your doctor should reconsider your diagnosis because unfreshing sleep is almost universal in ME/CFS patients. The report is evidence based. It might be worthwhile for those who are making comments about the report to actually read the report because it could lead people to the wrong conclusions about what is in the report. I am still reading it so really I can't make any of my own opinions about it until I am finished but it does appear some are jumping to conclusions without reading it.

 

[Valentijn]

A little contradictory?

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.

 

[heapsreal]

I like the idea of nk function being mentioned as a possible biomarker as well as chronic infections as many drs will deny chronic infections like ebv exist.

Atleast these are some measurable abnormalities that drs can test for and understand.

 

[adreno]

.
So, SEID. No longer Myalgic Encephalomyelitis and no longer a Neurological disease. Where have my symptoms gone?

Neurological diseases are caused by a dysfunction of the nervous system, or mainly affects the nervous system. There is no compelling evidence that this is the case for ME/CFS. For example, it might just as likely be an infectious disease, or an autoimmune disease, or even something else entirely.

Neurological symptoms as a term is also pretty meaningless; it is way too unspecific. The nervous system is involved most (if not all) symptoms. PEM, sleep dysfunction, pain, fatigue, OI, cognitive impairment are all related to the nervous system.

 

[OverTheHills]

I somewhat agree. But I think they're trying to find a balance between "don't kill the patient" and "disability is objectively provable". In the process of getting to that point of the document, it should already be very clear that exertion = bad, but I do think it would be good to have a specific caveat included within the CPET description.

(My bold) yes this is what I would like to see. Having seen the 'caution' in the full report, I expected to see a stronger warning about the potential dangers for more severe patients in this document

 

[OverTheHills]

The section on infection reads a little strange to me:
Infection
There is sufficient evidence to suggest that ME/CFS (SEID) can follow infection with EBV
and possibly other specific infections, but there is insufficient evidence to conclude that all
cases of ME/CFS are caused by EBV or that ME/CFS (SEID) is sustained by ongoing EBV
infection. There is also insufficient evidence for an association between ME/CFS (SEID)
and bacterial, fungal, parasitic, and other viral infections.


A little contradictory?

I didn't find this contradictory. How I read this was at first they are talking about causation - which they think can be due to EBV but also other things. Regarding perpetuation they don't consider ongoing EBV to be proven. Lastly they talk about association meaning like co-morbid infections - they don't see enough evidence that we get unusual volume/type of infections once we have cfs/seid/ME.

 

[nandixon]

@taniaaust1
For the "unrefreshing sleep" requirement, I think the IOM may, at least in part, be using Dr. Unger's 7 clinic survey study, which includes the Open Medicine Institute Consortium.

You can see the preliminary results (from 2013) for that study beginning on page 180 of the pdf document I give a link for at the very end of this post here:
http://forums.phoenixrising.me/inde...-myalgia-muscle-pain.35727/page-2#post-562079

The sleep-related charts/table are on pages 194, 195 & 198. For convenience, I'm giving two of the charts below.

(Note: Those 2013 survey results included nearly 400 ME/CFS patients. I think that number subsequently increased to about 500 - if I understood Dr. Unger correctly on her recent conference call with Dr. Montoya on Monday, Feb 23, 2015.)

 

[Ren]

Which common neurological symptoms do you feel have been omitted?

Neurosensory disturbance as a form of sensory impairment.


The following came to mind (though I may have just missed it being mentioned elsewhere) that:

pwME/CFS experience fatigability related to neurosensory disturbance: “sensitivity to light, noise, vibration…sensory overload”. Individuals with ME are advised to avoid multisensory overload.

(International Consensus Criteria for ME primer (2012) http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf)


Also:

The United Nations Convention on the Rights of Persons with Disabilities describes persons with disabilities as those “who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”
(http://www.un.org/disabilities/convention/conventionfull.shtml)

 

[adreno]

When comparing the ICC primer with the IOM guide, the IOM seems much more simple and straightforward. I believe this is a good thing.

 

[mango]

Which common neurological symptoms do you feel have been omitted?

i agree with ren above. sensitivity to light, sound, vibration etc is a huge problem for so many of us. i would really have loved to see them added to the sentence "Sensitivity to external stimuli (e.g., foods, drugs, chemicals)".

I expected to see a stronger warning about the potential dangers for more severe patients in this document

i agree! i wish they had underscored the dangers of large, long-lasting and/or repeated overexertion potentially leading to permanently lowered levels, permanently exacerbated symptoms etc... and put much more emphasis on the more severe end of things overall...

 

[Ren]

Building on my post 32 above and borrowed/adapted, in part, from a thread/post by Nielk:

CCC... Criteria # 5: Neurological/Cognitive Manifestations:

Two or more of the following difficulties should be present: ... perceptual and sensory disturbances – e.g. spatial instability and disorientation and inability to focus vision... There may be overload1 phenomena: cognitive, sensory – e.g. photophobia and hypersensitivity to noise - and/or emotional overload, which may lead to “crash”2 periods and/or anxiety...

http://forums.phoenixrising.me/inde...iteria-to-the-ccc-criteria.35765/#post-562254


Others elsewhere have pointed out that sensory bombardment is a type of torture. I imagine that what constitutes torture is defined by the range of normal human senses. Many pwME have a significantly and even extremely lowered threshold for sensory bombardment. If medical staff knowingly violate this threshold, is this not abuse?

Likewise sensory deprivation (and isolation) are forms of torture. Is it legal for governments and medical personnel to have knowingly left (and continue to leave) pwME rotting in isolation and due to reduced threshold, sensory deprived states?


If neurosensory disturbance / sensory impairment is not explicitly described, are medical personnel and government agencies off the hook for medical negligence when they abuse pwME in regard to neurosensory disturbance?

If neurosensory disturbance / sensory impairment is not explicitly described, what rights do pwME have to alternate forms of communication? Audio in addition to visual info, for example. Or government meetings which are broken down into more manageable and ME-friendly time chunks, for example?

And for those who might be able to work somewhat, will they have access to environments which work with neurosensory disturbance? What about clinic / hospital settings? People with extremely reduced sensory thresholds should have access to quiet, calm environments.

 

[Ren]

And one more in continuation of posts 32 and 35:

Hallmann et al. state that social institutions are ignorant of or ignore disabilities/impairments common to individuals with ME/CFS [postexertional neuroimmune exhaustion PENE and neurosensory disturbances]; for example, a significantly lowered threshold to light and/or sound and a limited threshold to standing and/or sitting.

Exposing individuals with ME/CFS to “persons with communicable airborne ailments” was also considered unacceptable.

Hallmann et al. further state that such environments negatively affect individuals with ME/CFS and exacerbate cognitive issues, which in turn impacts individuals' ability to interact effectively with social institutions. And because of widespread ignorance and prejudice, individuals with ME/CFS generally don't have access to individuals to advocate for them and help them navigate social institutions. Further findings suggest parallels between individuals with ME/CFS and other disadvantaged/discredited social groups.


G. Hallmann, R. Coutts, Y. Hartmann; “ME/CFS: Trauma in the Context of Social Institutions”, “ME/CFS: Social Security Accessibility and Experiences”, “ME/CFS: Institutional Dependence” (2014).

http://www.iacfsme.org/DesktopModules/DigitalDownload/2014Syllabus25.pdf

 

[Bob]

ummm Im shocked they've used something which had no research in in the main core of the definition. Its exactly what I'd thought when I saw that in the criteria and I really thought that wasnt from research done on ME/CFS.

There is research in relation to unrefreshing sleep, and it's clearly laid out in the full report. They are saying that no reliable objective measures have been demonstrated for sleep issues in ME/CFS. They are not saying that there's no research. The cited research is based on patient reports rather than objective data. For example, they cite a study by Jason in which 92% of patients report experiencing moderately unrefreshing sleep at least half of the time.

They are wrong, it isnt universal at all. My case is proof of this as a severe ME person meeting both International ME criteria and the CCC, the SEID criteria due to this dont fit me well.. as long as Im not crashing too badly or crashed, I do wake up feeling refreshed. (if refreshed is based on how fatigued one feels and having waking up with less fatigue).

Hi Tania, I pointed out to you yesterday that unrefreshing sleep is operationalised to include sleep disruption, which makes this criterion exactly the same as 'sleep disruption' in the CCC. In the full report, 'sleep disruption' is explicitly included in the operationalised section as a subset of 'unrefreshing sleep'. In the doctors' guide, it's not so explicit, but the suggested questions associated with the criterion demonstrate that 'unrefreshing sleep' is intended to be flexible in meaning.

Unrefreshing sleep doesn't relate purely to fatigue - it relates to the illness in general including all symptoms and impaired function.

The question to ask yourself is: Do you spring out of bed in the morning with no disability or symptoms? Or do you still have symptoms and/or impaired function after a night's sleep?

I do agree though, that it's perhaps not the most helpful of criteria because it's so broad and open to quite a degree of interpretation. But it does help to distinguish SEID from stress, normal tiredness, lifestyle issues and holding down three jobs simultaneously. The research they cite found that 16% of healthy controls report having moderately unrefreshing sleep at least half of the time, compared to 92% of patients.

This is my post from yesterday:

The 'operationalised' table in the full report on page 217, and the diagnostic tool on page 254, include unrefreshing sleep and sleep disruption. So, the way they've operationalised the criteria equates it to the CCC i.e. unrefreshing sleep and/or sleep disturbance. (Although, this does seem to contradict the rest of the IOM report.)

These are given examples of how it might apply to a patient:

"Cannot fall asleep or stay awake."

"After long or normal hours of sleep, I still don't feel good in the morning"

 

[Valentijn]

Neurosensory disturbance as a form of sensory impairment.

Are those a common enough problem to warrant special mention in the context of clinical diagnosis?

Personally I have little problem in that area, especially when not crashed.

 

[Nielk]

@taniaaust1 If you read the report, they did provide a synopsis of what research they used to make their decision regarding sleep and it does seem that a majority of ME/CFS patients suffer from unrefreshing sleep.

Most of the research on sleep problems for ME/CFS were subjective measures where patients filled out questionnaires. One objective study examined pairs of twins in which one twin had ME/CFS and the other was healthy. Compared with the healthy twins, the twins with ME/CFS reported more subjective complaints of insomnia, but objective measures of sleep were “remarkably similar” (Watson et al., 2003) Other studies generally have found only minor objective differences between ME/CFS patients and suitable comparison groups (Armitage et al., 2009; Majer et al., 2007; Neu et al., 2007; Reeves et al., 2006) or differences that were not statistically significant (Ball et al., 2004; Le Bon et al., 2007; Sharpley et al., 1997)

 

[Nielk]

Neurological diseases are caused by a dysfunction of the nervous system, or mainly affects the nervous system. There is no compelling evidence that this is the case for ME/CFS. For example, it might just as likely be an infectious disease, or an autoimmune disease, or even something else entirely.

It could very well be a neurological dysfunction of the nervous system caused by an infectious agent or of autoimmune function.