Input wanted from people who consider ME to be different from SEID

[taniaaust1]

@SpecialK82 Im not in the US but how I got my SPECT study done as I couldnt find a doctor to do things like that, so I joined ME/CFS research studies and through those got a SPECT... so I suggest to look out for this option to get one. I also got some great neuropsych testing done throu entering ME/CFS studies. (As I dont drive and cant leave my house without a support worker.. I even got picked up and dropped home for the study and paid too).

But what I was trying to get at was, would you risk taking the teatment if the clinical trials for such a drug were done on SEID diagnosed patients only?

If a person met both ME and SEID definitions even if they were calling it ME, I dont see then why they would have an issue with taking a SEID treatment if they wished.

Even I may consider that myself as I know SEID is a mixed group which also does include many with ME so maybe it may of been the ME people in the group it helped.. or maybe not.. Its something only someone can decide if they want to risk a trial of something based on something which may not work for them or not.

...................

I'd trial Rituximab any day. ME is so very disabling.. I cant do hardly a thing or my symptoms flare (the whole immune/ neuro/ autonomic dysfunction symptom thing) and I end up in hospital.. I'd trial it if I was able. Right now I cant even take care of myself. The worst someone is doing and thier life is due to it, probably the more risks they are willing to take to try to improve. Someone with minor CFS isnt likely to risk the dangers of Rituximab if they are informed of those risks.

 

[taniaaust1]

Yes, but why would you think research based on SEID patients would apply to you, an ME patient

ME patients thou have been mixed up with SEID, does anyone doubt that there are those who meet International ME definitions also meeting SEID ones?.. so it may apply to us.

It may not apply thou the other way around as all SEID people do not meet ME definitions.

 

[SpecialK82]

@SpecialK82 Im not in the US but how I got my SPECT study done as I couldnt find a doctor to do things like that, so I joined ME/CFS research studies and through those got a SPECT... so I suggest to look out for this option to get one. I also got some great neuropsych testing done throu entering ME/CFS studies. (As I dont drive and cant leave my house without a support worker.. I even got picked up and dropped home for the study and paid too).

Thanks @taniaaust1 , that is very cool that even had transportation for your ME/CFS studies! I appreciate your input, I'd love to get a SPECT done.

 

[WillowJ]

Here's a blog that addresses the issue:
http://www.methenewplague.net/blog/...AL-IDENTITY-OF-MYALGIC-ENCEPHALOMYELITIS.aspx

Here is what Melvin Ramsay wrote. It could hardly be clearer.

The clinical identity of the Myalgic Encephalomyelitis syndrome rests on three distinct features, namely:

A. A unique form of muscle fatiguability whereby, even after a minor degree of physical effort, 3,4,5 days or longer elapse before full muscle power is restored.

B. Variability and fluctuation of both symptoms and physical findings in the course of a day. And,

C. An alarming tendency to become chronic.

He goes on to contrast this with flu. “If we take the well known condition of post influenzal debility as an example of a postviral fatigue state we see that in all these particulars it constitutes a complete contrast. The fatigue of post influenzal debility is part of a general debility with no distinguishing characteristic of its own, it shows no variation in intensity in the course of a day and although it may last weeks or even many months, it has no tendency to become chronic.”

I said I wouldn't write about SEID but I will say this: to be diagnosed with SEID, the patient must exhibit an intolerance to effort. That in itself narrows things down. If the definition requires that effort makes the patient worse, we're coming closer to ME itself. The IOM committee quite rightly panned the term 'fatigue' and also replaced 'syndrome' with 'disease'. SEID might fly as a replacement for the hated 'CFS', but it's still not classic ME. Both I and Tymes Trust will continue to refer to ME to distinguish it from other diseases.

 

[SOC]

Here's a blog that addresses the issue:
http://www.methenewplague.net/blog/...AL-IDENTITY-OF-MYALGIC-ENCEPHALOMYELITIS.aspx

SEID might fly as a replacement for the hated 'CFS', but it's still not classic ME.

This may be one of the simplest, most relevant comments on the topic.

SEID is likely not exclusively classic ME. It is also not Fukuda CFS or Oxford CFS/ME. It's not exactly any diagnosis we've had before. It incorporates some of the best, but it is not exactly the same as any of them. This is not a bad thing.

SEID may identify exactly the same population as ICC-ME. We'll have to see how real clinical diagnosis with reasonably good physician guidance documents pans out.

SEID should include all patients who accurately meet the CCC or the ICC. It should not include patients who meet Fukuda or Oxford or the CDC empirical but do not have PEM. Again, real-world application will be the make-it or break-it as to whether this actually happens.

I do cringe a bit at the word "replace" in this quote. SEID is not equivalent to the hated CFS which does not require PEM. I'm assuming the author didn't mean an exact replacement for CFS (SEID=CFS), but a better name for the condition that the majority of us suffer from, which may not be "classic ME" in all cases. If the author actually did mean SEID=CFS, then I take back my endorsement.

 

[nandixon]

Here's a blog that addresses the issue:
http://www.methenewplague.net/blog/...AL-IDENTITY-OF-MYALGIC-ENCEPHALOMYELITIS.aspx

Here is what Melvin Ramsay wrote. It could hardly be clearer.

The clinical identity of the Myalgic Encephalomyelitis syndrome rests on three distinct features, namely:

A. A unique form of muscle fatiguability whereby, even after a minor degree of physical effort, 3,4,5 days or longer elapse before full muscle power is restored.

B. Variability and fluctuation of both symptoms and physical findings in the course of a day. And,

C. An alarming tendency to become chronic.

Interesting. Based on that (unverified) source, the illness would have been more aptly named "Myasthenic Encephalomyelitis" rather than "Myalgic Encephalomyelitis."

The description of the "three distinct features" fits perfectly for me. I have the muscle fatiguability/weakness (i.e., myasthenia) but not the muscle pain implied by "myalgic."

 

[Mij]

@nandixon do you have muscle tenderness?soreness at all?

 

[nandixon]

@nandixon do you have muscle tenderness?soreness at all?

No. Painwise, I do have headaches/migraines that started at the same time as all my other symptoms about 17 years ago, but no muscle tenderness or soreness.

Perhaps the variability in symptoms is partly related to each person's weakest (or strongest) genetic links.

 

[alex3619]

Here's a blog that addresses the issue:
http://www.methenewplague.net/blog/...AL-IDENTITY-OF-MYALGIC-ENCEPHALOMYELITIS.aspx

I think that point about post viral fatigue and ME,first stated by Ramsay, is right. Regular post viral fatigue is not ME. Other research supports this, including the Dubbo study. Only about 10% of post viral cases go on to become something more intense and chronic.

 

[Jonathan Edwards]

I think that point about post viral fatigue and ME,first stated by Ramsay, is right. Regular post viral fatigue is not ME. Other research supports this, including the Dubbo study. Only about 10% of post viral cases go on to become something more intense and chronic.

Without wanting to support one side or other of the main argument I am actually quite bothered by the claim quoted from Ramsay:

The clinical identity of the Myalgic Encephalomyelitis syndrome rests on three distinct features, namely:

A. A unique form of muscle fatiguability whereby, even after a minor degree of physical effort, 3,4,5 days or longer elapse before full muscle power is restored.

B. Variability and fluctuation of both symptoms and physical findings in the course of a day. And,

C. An alarming tendency to become chronic.

I can still remember my 6 month post EBV fatigue from 50 years ago (it changed my life for a brief period) and as it happens I am currently in the middle of a post viral fatigue episode that has lasted a month and I am rather hoping will be gone by next week.

So let's check Ramsay's claims:
A. I remember during the post EBV phase trying to do sport with my friends and being completely out of action for several days. This week I did a walk along the river on Monday and felt seriously worse until Friday. So Ramsay seems to be wrong here. I am sure that true ME crashes or PEM are worse but I am not convinced that PEM as he describes it is unique. I think he may have worded it wrong but then we need to clarify what the difference really is.

B. My symptoms have been fluctuating during the day all week. At one point I think I am better and then at another I feel fluey again. I think this distinction is very unimpressive. Again it may be wrong words but it doesn't cut it.

C. This claim is circular. In Dubbo if you still had fatigue at two years you had ME/CFS. If it becomes chronic it is CFS, if not it is just post viral. Everybody seems to agree that ME is 'post viral' to begin with. So when Ramsay says The fatigue of post influenzal debility ... and although it may last weeks or even many months, it has no tendency to become chronic.” he is wrong, at least if we substitute EBV for flu.

 

[alex3619]

Ramsay was using data from a relatively small number of epidemic cases. We already know patient symptoms varied epidemic by epidemic, you just have to read the reports. So its very hard to be sure he was in a position to accurately assess all this.

Further, the 2 day CPET data, though it needs more work, seems to show a unique problem. Its also possible the Light's work is unique. Those form better bases toward a diagnostic biomarker.

One of the open questions floating around is whether or not the three year shift is a shift from post viral to ME. We just don't know for sure.

The Dubbo studies are no more than suggestive. We need better. I think I recall reading another round of studies of this type are underway with better design etc.

Most post viral fatigue resolves on its own. Most within six months. I think this is a confounding factor as those cases that do not resolve within six months are then eligible for CFS diagnoses if not ME, provided they meet whatever criteria you use.

As always we need more and better studies.

 

[CantThink]

Having observed family members, I have noticed recovery from a nasty bout of flu or a virus seems to fluctuate. At first there is improvement to the point where the person wants to do activity, so they do the activity and perhaps overestimate how much they can do, then they need to rest, recover, and it goes on like that until they don't feel worse after doing things and are recovered.

What I've noticed with that is that the overall trend is improvement (even with the fluctuations they don't tend to dip down to worse than the previous time). Sleep and rest appears to be restorative and refreshing, or at least leads to this continued improvement. This is different to how I experience M.E. - but not different to how I'd experience recovery from flu (I always take 2-3 the time of those around me to recover from anything, but I do recover in a slow, steady way).

With M.E., my overall trend is not a slow and steady improvement. Sleep is never refreshing. I wake up every morning feeling as if I've been hit by a bus, my 'starter motor' is broken and my 'batteries' are flat. Rest when I'm worsening due to activity (physical or mental) is merely an attempt to halt the worsening - not even to try to recover or improve.

To recover from PEM I have to do nothing for much longer periods than if a person was recovering from the flu and had temporarily set themselves back. When I do recover it is back to my current 'average' M.E. level of functioning. I just don't feel that 'getting better' recovery feeling where you're shaking something off.

 

[Mij]

@nandixon interesting. I thought everyone with M.E. had some sort of myalgia (in the body muscles), but Dr. Hyde says this:

The Presence or Absence of Various Pain Syndromes is highly variable: The pain syndromes associated with the acute and chronic phases of M.E. may be described as Early and Late findings. Early Findings: (a) severe headaches of a type never previously experienced; (b) these are often associated with neck rigidity and occipital pain; (c) retro-orbital eye pain; (d) migratory muscle and arthralgia pain; (e) cutaneous hypersensitivity. Late Findings: Any of the early findings plus (f) fibromyalgia-like pain syndromes. This is only a partial list of the multiple pain syndromes. Many of the pain features tend to decrease over time but can be activated or increased by a wide range of external & chemical stressors. (See Clinical and Scientific Basis of M.E./CFS, Chapter 5, pps. 58-62)

 

[snowathlete]

This is the source being talked about on that blog, I believe.
http://www.cfids-me.org/ramsay86.html

Ramsey's description of the disease is pretty good, in my opinion - name aside. But I think people should quote the whole of what he says, as although you may provide a reference, people often won't go and look it up themselves. If you do go and look you will notice that he says a cardinal feature was Emotional lability. He also talks about uncontrollable crying. How do people feel about that? I'm pretty sure if either of those things were mentioned in the IOM report there would have been outrage, no?

 

[Mij]

There is a neurological condition called PBA
PseudoBulbar Affect
can cause outbursts of crying and laughing. Personally I have never encountered anyone or read any message online where ppl with M.E. had this particular disorder except when making fun of Wessley.

 

[Dr.Patient]

My disease has changed over time, mostly with more symptoms developing, but with some disappearing with treatment. I'm not sure I would have met the ICC criteria in the earliest stages where some of my symptoms were so mild I wouldn't have reported them -- particularly neurological ones.

I have met the ICC criteria for many years now and see it as a good description of my illness. The question is: which definition, ICC, CCC, or SEID would catch the most true (as far as we can tell) patients at all stages of the illness? That would be be best clinical diagnosis criteria. It looks like the SEID criteria would catch more patients across the range and progression of the condition, which is what is needed in a clinical diagnostic criteria. Eliminating patients in the early stages, or who have mild versions, from a clinical diagnosis would be extremely unjust. They don't deserve treatment until they're so sick they're housebound or bedbound? I don't think so.

So how do we catch, for clinical treatment, patients at all stages of the illness? We identify the smallest set of features that uniquely defines the condition. Sure, patients will have all kinds of other symptoms -- many changing over time -- but what makes the illness what it is and not depression, or primary OI, or overtraining syndrome, or any of the other conditions previously misdiagnosed as "CFS"? It's PEM -- the unique feature of our condition. We have PEM with other symptoms at milder or more severe levels, but we all have PEM.

Well said! This is the clearest, most coherent explanation I have seen so far on this topic. PEM is the classic feature. More important, debilitating weakness is the other one that is present in all of us.

Post exertional malaise, or post exertional Neuro immune exhaustion, means " I get badly exhausted after exertion." Try this on a normal person. Will he say that he doesn't have this?

The key here is the recovery that happens after exhaustion in us is prolonged, for days, months... Will a normal person say he has this?

According to the extremely well put argument above by @SOC , we have to identify the smallest set of features that uniquely defines our condition, that would capture almost all of our patients at all stages of our illness. That term is prolonged-recovery asthenia gravis. PRAG.

The subsets of patients that will immediately raise objection can be classed with a Neuro, viral, orthostatic etc..qualifier. Can they deny they don't have asthenia or prolonged recovery? If they say they have energy to live as before, and their exhaustion after exertion lasts only a day, perhaps, they have another illness, and not PRAG.

I am starting a poll to see SEID or PRAG.