Yes vs No - respectful discussion

[SOC]

SOC I meet both the CCC and the international ME criteria well but do not well meet SEID which leaves my diagnoses in doubt.

In my case this is cause the unrefreshed sleep part of the SEID diagnoses.

Thank you, tania, that helps.

What do you (and other people in this discussion) think is meant by unrefreshing sleep? My understanding is that they mean that fatigue/exhaustion and other symptoms are not resolved by a good night's sleep, as they are in healthy people.

So, tania, when you have a PEM episode, can you go to bed, get a good night's sleep, and wake up symptom-free in the morning? If so, then I agree that you might not meet the SEID criteria.

I sleep well in general these days, but if I am symptomatic (for whatever reason), sleep does not relieve my symptoms. I am not simply overtired and in need of a bit more sleep. Sleep does not resolve ME symptoms. I believe I meet the SEID criteria including unrefreshing sleep.

Maybe if I have time and energy tomorrow, I'll go back through the IOM report to see if I can find something (It might have been in the part suggesting questions for doctors to ask???) about how doctors identify unrefreshing sleep. In some ways, I wish the document weren't quite so long; I'm finding it very hard to remember what's in it and what I've seen elsewhere.

 

[taniaaust1]

Me, too. I wonder if the difficulty is that in well-managed patients, myalgia may be controlled by pacing and other treatments. So patient surveys may not show consistent or persistent pain even though pain has been a feature of that patient's overall experience with ME/CFS. That's always a problem with symptoms surveys -- current symptoms don't necessarily reflect the full nature of the illness in treated patient populations. The IOM was working with the reports/surveys available to them which may or may not reflect the full patient experience.

I don't have pain of any kind now, nor have I had consistent pain for a couple of years. However, I definitely had myalgia before I was treated by ME/CFS specialists, and I still get it again when I PEM. So while myalgia is definitely a feature of my illness, on a current symptom survey, I would have to say I don't have pain.

Thinking out loud and ignoring the choice of name for the moment…

Is the polarization because there are actually two separate diseases here, one described by SEID and one described by ICC? Or is the polarization because some feel that the criteria defined by IOM do not do a good enough job of representing the disease we call "ME" while others feel that the criteria are good enough to move forward?

makes me think of what Hyde said - "Definitions are not diseases, they are often simply the best descriptions that physicians and researchers can offer." So are there really two different diseases? And was IOM trying to develop a criteria for just one of them? Or do we have two different definitions trying to describe the same disease?

Once PEM, unrefreshing sleep and cognitive dysfunction are defined as core symptoms, it doesn't seem like we are dealing with two diseases. If that's true, then it seems that the question boils down to whether the new criteria accurately reflect the nature and breadth of the disease they are intended to describe - including neurological and immunological, while also avoiding the CFS definition problems that led to this disease being conflated with psychiatric disease, medically unexplained fatigue, etc for 30 years.

I honestly do not think the current definition will make sure it only includes ME people as its too vague. eg someone with systemic mastocytosis can get ill after exercise (exercise can be a trigger for that illness) and they can have cognitive dysfunction and a lot of other symptoms too. Some of them could meet current SEID defintion.

So the new definition certain does not at all rule out other illnesses, so once again it just comes down to all other diseases must be ruled out first. How stupid, a definition should clearly define a disease and not need the other illnesses ruled out first. We know when we have a good defining criteria in which other illnesses cant be mistaken for ours.

 

[Mij]

I'm not understanding what "unrefreshing sleep" or dysfunctional sleep has to do with our illness in the first place. Why is it a part of the criteria? Some of us sleep well. I slept like a baby during the first several of my illness and I woke up feel totally disabled (worse than I do presently) and sick.

One thing is for sure though, sleep does not relieve my PEM- not one tiny bit.


Now my sleep dysfunction is due to menopause. I'm actually feeling better these last few years despite my disrupted sleep. It's not related at all.

 

[SOC]

I honestly do not think the current definition will make sure it only includes ME people as its too vague. eg someone with systemic mastocytosis can get ill after exercise (exercise can be a trigger for that illness) and they can have cognitive dysfunction and a lot of other symptoms too. Some of them could meet current SEID defintion.

Interesting point. Does anyone know if systemic mastocytosis actually has PEM, or is it some other form of exercise intolerance? I thought that, as far as we currently know, no other illness has PEM. Exercise intolerance exists in other illnesses, but that's not PEM.

Does systemic mastocytosis meet all the diagnosis criteria for SEID? If so, does that make it one of possibly many illnesses distinguished by PEM and therefore falling under the SEID umbrella?

How stupid, a definition should clearly define a disease and not need the other illnesses ruled out first.

Which is exactly why, ideally, we want a diagnosis of inclusion, not a diagnosis of exclusion. SEID is the first diagnosis of inclusion we've been given with this illness.

We know when we have a good defining criteria in which other illnesses cant be mistaken for ours.

If only we knew exactly what our illness is. That would make it a lot easier to guarantee no other illness is mistaken for ours. I, for one, can't wait for that day.

 

[SOC]

I'm not understanding what "unrefreshing sleep" or dysfunctional sleep has to do with our illness in the first place. Why is it a part of the criteria? Some of us sleep well. I slept like a baby during the first several of my illness and I woke up feel totally disabled (worse than I do presently) and sick.

One thing is for sure though, sleep does not relieve my PEM- not one tiny bit.

Well there you go. That's why it's part of the criteria. Sleep does not resolve our symptoms. If you were excessively fatigued, in pain, etc after activity, but woke up refreshed and symptom-free the next morning, you did not have PEM and you don't have SEID.

 

[taniaaust1]

Thank you, tania, that helps.

What do you (and other people in this discussion) think is meant by unrefreshing sleep? My understanding is that they mean that fatigue/exhaustion and other symptoms are not resolved by a good night's sleep, as they are in healthy people.

umm interesting. I didnt even consider unrefreshing sleep being defined how you are if you are refering to "other ME symptoms" and not fatigue. Most people when they think of if someone is waking up unrefreshed would base it on whether a person still feels tired or not. I think most doctors would base it on fatigue when one wakes up and not if other symptoms are gone (as after all most of them think this illness is mostly about fatigue).

As its the POTS which tends to mostly floor me now (cause I can hardly do enough to flare my ME bad, I cant even stand at my sink to do my dishes). POTS symptoms or a POTS crash tend to settle down overnight (unless im needing a saline IV) and hence can leave the person feeling refreshed next morn and feeling sooo very good (relieved) when one first wakes up (that is till the POTS person actually tries to get out of bed an on ones feet!!).

Its a huge psychological relief for me too when I wake up in the mornings and find my POTS has settled down and Im all reeved up for a new day.

I do thou still have ME but I dont even currently know how bad my ME is as the POTS is currently my dominant ME symptom and stops me from doing most things.

So a ME person waking up feeling great and not tired or not too tired... you cant realy say that person is getting unrefreshing sleep. Its irronic as even with waking up refreshed, I can do far less then many people at the website cause I just cant be on my feet for long.

Nowdays the times I do ME crash (by ME crash I mean a day after something crash) instead of POTS crash, that will have me sleeping for say 18hrs straight from the time the next day it hits onwards but then I can wake up feeling refreshed after that sleep wise (thou I may stil have some other ME symptoms and still be in a ME flare, eg feverish, cough, sore throat which could last days or more. There is far more to ME symptoms then fatigue (or rather I should say exhaustion), its just not one of my stronger ME symptoms unless Im ME crashed.

I do think part of it is I dont recognise either when Im "fatigue" as Ive lived with that so long its my normal.. I suspect I may have it all the time but not recognise I have it. (of cause I can notice when Im ME exhausted or the fatigue gets too bad). I actually doubt I know what its like to feel normal.. so my feeling refreshed probably isnt a normal persons feeling refreshed. Its all subjective..and that is what makes all this diagnoses without testing a dangerous thing for us all to have such a vague definition.

Its like childbirth.. one person will go "that was unbearably painful" while another may go "it didnt hurt much". (im in the childbirth dont hurt much catagory.. I really enjoyed giving birth with my second child who was a footling breach.. baby in splits position with foot by head).

Fatigue is very subjective. I often dont notice Im fatigued till Im ready to collapse or just fall asleep. First year of my ME, I didnt even mention fatigue to my doctor.. it wasnt something which was bugging me.. it was the fevers, swollen glands, headaches, muscle pain, sore throat and other symptoms which did.

 

[taniaaust1]

Interesting point. Does anyone know if systemic mastocytosis actually has PEM, or is it some other form of exercise intolerance? I thought that, as far as we currently know, no other illness has PEM. Exercise intolerance exists in other illnesses, but that's not PEM.

People thou define PEM differently. Many people will define it as malaise (feeling unwell etc) from exercise. People who's symptoms flare up on exercise with other illnesses, may last quite a time eg may still be suffering from a flare the next day. Many doctors will view that as PEM if they dont have an exact definition for it.

I dont know if they've clearly defined what PEM should be in the info? Do they defined it as a day after exercise thing..or something which can occur right after exercise ..or did they not define what PEM is? Without a definition most doctorrs will think of it being malaise right after exercise.

http://mastocytosis.blogspot.com.au/ (someones mastocytosis post in which they list their triggers.. mild physical exertion is a common systemic mastocytosis trigger).

 

[taniaaust1]

Which is exactly why, ideally, we want a diagnosis of inclusion, not a diagnosis of exclusion. SEID is the first diagnosis of inclusion we've been given with this illness.

Diagnoses of inclusion is only good if other things cant be mistake for it..

If only we knew exactly what our illness is. That would make it a lot easier to guarantee no other illness is mistaken for ours. I, for one, can't wait for that day.

Im sure I have ME.. . (thou I strongly suspect I may have a couple of other things on top of that eg mast cell disorder, mito issues).

 

[taniaaust1]

I'm not understanding what "unrefreshing sleep" or dysfunctional sleep has to do with our illness in the first place. Why is it a part of the criteria? Some of us sleep well. I slept like a baby during the first several of my illness and I woke up feel totally disabled (worse than I do presently) and sick.

One thing is for sure though, sleep does not relieve my PEM- not one tiny bit.


Now my sleep dysfunction is due to menopause. I'm actually feeling better these last few years despite my disrupted sleep. It's not related at all.

I agree with Mij.. sleep doesnt relieve my sore throats, fever, IBS, MCS and other symptoms I have.. (it just relieves my fatigue if Ive been careful and are not crashing.

I can imagine doctors handing out a SIED symptom thing for us to fill out with the question on it "In the past two weeks have you had "unrefreshed sleep" and me ticking the no box if Ive been being careful so I havent crashed.

 

[taniaaust1]

Maybe if I have time and energy tomorrow, I'll go back through the IOM report to see if I can find something (It might have been in the part suggesting questions for doctors to ask???) about how doctors identify unrefreshing sleep. In some ways, I wish the document weren't quite so long; I'm finding it very hard to remember what's in it and what I've seen elsewhere.

I havent read the document yet, just the diagnostic definition. I really really hope they've defined things in the document.

But then what normal every day doctor is going to go throu the whole document to make sure he's got what is meant by terms like "unrefreshed sleep" or "post exertional malaise".. most doctors wont even think about that their views on what these terms mean may be wrong.

This whole thing is meant to be so ordinary doctors can diagnose ME/CFS people so is supposed to be just simple. It's all thou coming down to everything being subjective even what the doctor thinks about certain things when we know an average doctor wont read the whole thing even if the things are defined somewhere in the long text.

 

[SOC]

I think it's time for me to give up trying to discuss the IOM report with people who haven't bothered to read it. It's becoming a waste of time and energy I don't have to spare.

 

[Cheshire]

I honestly do not think the current definition will make sure it only includes ME people as its too vague. eg someone with systemic mastocytosis can get ill after exercise (exercise can be a trigger for that illness) and they can have cognitive dysfunction and a lot of other symptoms too. Some of them could meet current SEID defintion.

I think that's an interesting point. Myasthenia gravis also makes people ill after exercising. Could they qualify for PEM, or is it different?

 

[dancingstarheart]

Here is something of interesting that Jack Elliot had kindly brought to my attention. Dr. Bateman has the following published commentary (post-IOM report release) that actually states ME will remain separate from "ME/CFS" and will keep its original code and diagnosis criteria.

""From pg 24 of the February edition of the ME Global Chronicle (http://let-me.be/download.php?list.1 ).

"The Name And The Report
The editors: “Dr. Lucinda Bateman forwarded us the following considerations, to react upon by whomsoever feels like. Please mail to contribute@let-me.be. We will definitely publish a gist of the reactions and answers in the next issue (or if needs must be extra edition(s) just on this discussion) of the ME Global Chronicle.”
The Report: http://let-me.be/request.php?14
The Presentation: http://let-me.be/request.php?15
Dr. Lucinda Bateman:
I encourage our me/cfs community to focus scrutiny on the content of the report, and proper application of the suggested diagnostic criteria, rather than the name. The committee felt it was inappropriate to use a name already linked to alternate diagnostic criteria, and, that it could create even more confusion to use an existing name in more than one way. It is my opinion that the non-US me/cfs community would be even more outraged to have the IOM suggest that our new diagnostic criteria are the "new" criteria for ME when an ME definition already exists and is in broad use outside the US
One central goal of the IOM report, and it is clearly stated in the report, is that the term Chronic Fatigue Syndrome/CFS, should be abandoned, not only because it has become stereotyped and misunderstood, but also because the illness it delineates is a heterogeneous group which doesn't equate well with groups delineated using PEM as a primary and required symptom.
The term SEID can be applied to anyone who meets the evidence-based diagnostic criteria outlined in the report. This fact doesn't mean that other criteria are invalid. For example, it is possible that patients defined by ME criteria may prove to be a more severely ill subset of SEID. My own opinion is that everyone with illness deserves a diagnosis, not only those of a certain illness severity. These issues can and should be sorted out with well designed studies. But many of the issues will resolve as we establish better objective markers and diagnostic studies, and when longitudinal studies are done.
I don't recall anything in the IOM report that states the term Myalgic Encephalomyelitis, or ME, can not be used to describe someone who meets published ME criteria. The recommendation is stop using ME/CFS.
The IOM committee reviewed published literature of a pre-determined quality published before a certain date, which I think was in April 2014. So the research regarding PET, MRI and quantitative EEG, that are so interesting and exciting to the ME/CFS community, were mostly published too late to include in the report. These, the many other studies in progress or nearing publication, and the pace of current research, led the committee to make a formal recommendation that the diagnostic criteria be re-examined and modified in NO MORE than 5 years, with federal funding, and by "nonconflicted" sources, so that the diagnostic criteria can keep up with research advances."

 

[SOC]

I think that's an interesting point. Myasthenia gravis also makes people ill after exercising. Could they qualify for PEM, or is it different?

Myasthenia gravis (MG) was first described by Thomas Willis in 1672. It is an acquired autoimmune disease with antibodies against the nicotinic acetylcholine receptor (AChR) at the neuromuscular junction or muscle-specific tyrosine kinase (MuSK).[1] This leads to muscular weakness with easy 'fatiguability', which is worse on exercise and improves with rest.

http://www.patient.co.uk/doctor/myasthenia-gravis-pro

Since their exercise intolerance appears to be muscular weakness and easy fatiguability which improves with rest, I would say that does not qualify as PEM. There are no "prominent symptoms in the neuroimmune regions."

Similarly, mastocytosis can exhibit with exercise-induced anaphylaxsis, but this is not PEM and would not qualify for a SEID diagnosis.

Fatigue as a result of exercise intolerance exhibited by multiple conditions, is relieved by rest, so is not PEM and also would not qualify for SEID because it is relieved by rest. Also, exercise intolerance does not have "prominent symptoms primarily in the neuroimmune regions."

The best description of PEM that I'm aware of is in the ICC:

A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
Operational notes:For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level.Mild(an approximate 50% reduction in pre-illness activity level),moderate(mostly housebound),severe(mostly bedridden) orvery severe(totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects.Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately.Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.

 

[taniaaust1]

I think it's time for me to give up trying to discuss the IOM report with people who haven't bothered to read it. It's becoming a waste of time and energy I don't have to spare.

i can understand you not having energy to spare etc but dont be too harsh on those who havent read it yet "havent bothered". Im struggling to remember the new definition and kept forgetting it, all I can currently remember of that thou Ive read it 3 times now is that it had 50% unrefreshing sleep in it.

If I try to add more info to my brain right now and try to absorb more on what is going on, I'll start terribly confusing what Ive read and end up confusing everyone here by wrongly refering to stuff from there which may or may not be there. My brain can only absorb a bit of new info at once and hence Im trying to learn bout it from forum comments a wee bit at a time so I dont go and overwhelm my brain and confuse it all.

(Im trying hard to get into my head the new definition.. and will keep reading that daily until I can remember tht before I go into reading and trying to absorb anything else of the IOM stuff. I find learning and remembering anything new quite diiffult.. its not about "not bothering to read it"..

I really wish I was up to reading it and knew if I did I wouldnt be screwing up everything Ive read due to trying to absorb too much new at once.

 

[taniaaust1]

I don't recall anything in the IOM report that states the term Myalgic Encephalomyelitis, or ME, can not be used to describe someone who meets published ME criteria. The recommendation is stop using ME/CFS.

That does sound good. Im so glad to hear this statement being made. Thanks for posting it.

I think I will stop stressing about SEID as Ive decided its irrevelent to me.

 

[justy]

I think a major problem for the IOM, that they admit, is that we just don't have the research studies that are needed to support the name ME for example, or probably that it is neurological, or immune, etc. The IOM themselves say that the research has to be done - they were completely surprised, I think, that they didn't have more research to draw from. They are hoping now after the report that good research will follow and that it be funded appropriately by the NIH.

Sorry cant read through the whole thread. What about the 3,000 plus research studies that the M.E community is always talking about? where have they all gone? Why could they not find more research to draw from. is it because the research isn't up to scratch or has it been buried and ignored. They only need to ask Anthony Komaroff and surely he could point them in the right direction?

Sorry just a bit confused on this point...Seems disingenuous to me.

 

[eafw]

IOM are not accurate to say no inflammation evidence is there for ME CFS.

Why do you think the IOM report says that ?

For example:

Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An 11C-(R)-PK11195 PET Study.

This paper is referenced in the report, page 105, along with others in a section on neurocognitive findings

 

[Bob]

In my case this is cause the unrefreshed sleep part of the SEID diagnoses. In those other two criterias nothing is thought about a person not having unrefreshing sleep (in the other criterias one has to have a certain amount of symptoms from certain areas). Of cause there are MANY different sleep issues in ME eg reversed sleep cycle and insomina as I more commonly get.. these thou do not necessarily mean unrefreshing sleep

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"

 

[Bob]

In the report, post external malaise is defined as a prolonged exacerbation of the patient's baseline symptoms after physical or cognitive exertion, or orthostatic stress, that lasts for more than 24 hours after exercise, and may have delayed onset after trigger event. (I'm paraphrasing slightly, because there are various similar descriptions of PEM in the report, and I've included info from two different descriptions on pages 216 & 254.)