Where to start?
As far as I'm aware I don't have immune dysfunction or at least no-one has ever shown me objective evidence that I do.
That begs the question of whether you have been adequately tested. For example, have you been tested for NK cell number and function, CD8+ count, IgG and IgM levels? And that's just the beginning.
The ICC requires immunological impairment:
The individual must demonstrate immunological impairment by meeting a total of at least three symptoms from three of these five categories:
1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion
2. Susceptibility to viral infections with prolonged recovery periods
3. Gastointestinal tract
4. Genitoruinary
5. Sensitivities to food, medications, odours or chemicals
Depending on how the questions are asked and interpreted I could easily meet both the CCC and ICC criteria but not Fukuda. Let's just say if I was asked the simple question - particularly in the early years - have you suffered from fatigue over the last 6 months - I'd have answered no - although I did have exercise intolerance and POTS plus other symptoms required by the 'better' criteria.
PENE is not exercise intolerance. Exercise intolerance is a symptom of a number of different diseases. POTS by itself, for example, can result in exercise intolerance without the other characteristic features of PENE. PENE, is described in the ICC as follows:
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.
“Characteristics are:
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. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 hours 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.”
[my bolding]
Only point 5 is the above list is similar to exercise intolerance. So exercise intolerance may be a
part of PENE, but it is not equivalent to PENE.
Its also not clear at this point that pysch issues are not an organic part of ME (emotional lability as per Ramsey ME anyone). I accept that some and even many may not have them. I wouldn't expect everyone to be affected in the same way even if the problem is primarily neurological. I don't and never have had tender lymph nodes but I don't deny that others might.
So far, our experts have not included psychological issues as part of the CCC or ICC definition of ME/CFS. That's good enough for me for the moment. The last I remember reading was that depression is no higher in PWME than in the general population. So of course some PWME have depression and anxiety and even other psychological disorders. ME certainly doesn't
protect us from such conditions.
Emotional lability is not a psychological disorder. It is an established
neurological disorder not treatable by psychotherapy.
What exactly is 'clear organic illness'. Isn't it 'the point' that we don't have any objective markers of organic disease ...
No, that hasn't been 'the point' for a number of years now. There is no
single biomarker that absolutely selects people with ME/CFS from those without. That doesn't mean there aren't plenty of objective markers of organic illness.
...and what exactly is PEM or PENE and how is it measured?
See above. In addition, appears the 2-day CPET is giving clear indications of measurable energy production dysfunction distinct from exercise intolerance.
Making a distinction between 'idiopathic' fatigue and ME, ME/CFS or CFS is an entirely arbitrary one at present as is a 'psychiatric' diagnosis.
No. If you read the CCC and the ICC, you can see clearly how the distinction between idiopathic fatigue and ME/CFS is made.
Let's face it MS used to be considered a 'clear psych issue'.
Yes, and that was incorrect. I'm not sure what your point is here.
If you wish to make a distinction between 'CFS' and Myalgic Encephalomyelitis (which I do have listed on my medical records BTW) then I'm afraid the only cohort who could logically qualify for a diagnosis of Ramsey ME are those who were hospitalised at the Royal Free at the time. Extending this diagnosis to anyone else is pure conjecture.
I don't try to make that distinction at this point. In my country the illness we have is called "CFS". That's the terminology/coding we're stuck with, fair or not, correct or not. That's why researchers in this country use that name for the illness in their research papers. We don't have to like it, but it's a reality we have to deal with.
I don't try to make everyone fit into the Ramsey ME diagnosis. Research has progressed since Ramsey's time (and I think he would have embraced the biomedical research that has happened since he was working). The CCC and/or the ICC are the best definitions we have based on what is
currently known about the physical characteristics of the disease.
Don't call it ME or CFS or ME/CFS if you don't want to. The illness I (and most people here) am talking about is defined by either the CCC or the ICC. For convenience, the research community has temporarily settled on the name ME/CFS (or sometimes ME) for that illness. I'll use the name the top clinicians and researchers are using until we can get a better name. Whatever we call it, psychological issues are not a required part of either of those definitions.