ME - Syndrome or Disease?

[xchocoholic]

xchoco, I think most people here have gone to the doctors over and over again in case they missed something or they can find other ways to treat this, but come back with the CFS diagnosis. So IMO it is equally beneficial to spend a lot of time on this forum and exchange possible causes and treatments than going to the doctor. Truth is nobody knows in which category they fall and I have read now from many who transitioned freely through those categories that are supposedly so distinct.

Hi mellster,

I totally agree with coming to these forums for ideas. We can learn a lot from each other and probably more than we can learn from medical professionals at this point. We have first hand access to what works or doesn't work on us. They can only read studies ...

I still see traditional doctors but only for what I know they know if you know what I mean ? lol ... I'm following my integrative doctors lead at this point and looking for causes.

We know that I have leaky gut syndrome and unfortunately whatever damage may have occured while I was still eating gluten after getting ataxia, white leasions and myoclonus for 16 years. That's gotta leave a mark ...

At this point, I still have a diagnosis of CFS / ME due to OI, PEM and an upregulated immune system. I can't relate to not falling into the ME category from day one but I'm happy to hear others can.

Hi Enid,

sorry to hear that you can relate. Hopefully, we'll get to the bottom of all this someday .. hugs ...

tc ... x

 

[SOC]

I heard (Docs in the family) that syndrome is a classification of symptoms when the underlying mechanism is not yet understood. Triggers may differ but the essential aetiology (origin) producing common symptoms not yet fully known.

Err.... what about Down Syndrome, or Severe Acute Respiratory Syndrome (SARS), or Acute Radiation Syndrome? The essential aetiology of these, and other, syndromes is well known.

You'd think a doctor could figure that one out, although many don't apparently.

 

[Ember]

I relate easily to understanding ME as a form of CFS, just as migraine is a form of headache and mycoplasma pneumonia is a form of pneumonia. According to my experience, PENE identifies a cardinal feature of the disease, characterizing it well as neuroimmune exhaustion. (So too does Laura Hillenbrand's quotation, Fatigue is what we experience, but it is what a match is to an atomic bomb.)

Gordon Broderick writes, Whether patients with less severe conditions represent a continuum, faulty diagnosis or different disease entities can only be determined by future studies. Concerning the underlying pathophysiology of ME, he adds, There is simply too much evidence of pathophysiologic neurological and immune dysregulation, immune activation and an imbalance between inflammatory and anti-inflammatory mediators to be ignored [3256] (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02499.x/full).

 

[nanonug]

According to my experience, PENE identifies a cardinal feature of the disease, characterizing it well as neuroimmune exhaustion.

Why neuroimmune? Why not just immune?

 

[Ember]

The ME-ICC cites Jason et al. in comparing CFS with ME:

Some symptoms of the Fukuda criteria overlap with depression, whereas the Canadian Consensus Criteria [20] differentiate patients with ME from those who are depressed and identify patients who are more physically debilitated and have greater physical and cognitive functional impairments [21].

Jason et al. also stress the neurological nature of the disease. Here are some conclusions from their article, Comparing the Fukuda et al. criteria and the Canadian case definition for chronic fatigue syndrome:

Given the importance of the weakness/fatigue, neurological and neuropsychiatric symptoms, it seems possible to conclude that the Canadian and ME criteria identify a more debilitating illness group than the CFS group.

In combination with symptom patterns, it is possible to conclude that the Canadian group does select individuals with greater impairment, particularly given the physical composite score, fatigue/weakness, neurological and neuropsychiatric symptoms, as these symptoms can interfere with daily living and occupational performance.

The Canadian criteria identifies patients with more fatigue/weakness, neurological and neuropsychiatric symptoms than the Fukuda CFS criteria does.

 

[hixxy]

Hi mellster,

I totally agree with coming to these forums for ideas. We can learn a lot from each other and probably more than we can learn from medical professionals at this point. We have first hand access to what works or doesn't work on us. They can only read studies ...

I still see traditional doctors but only for what I know they know if you know what I mean ? lol ... I'm following my integrative doctors lead at this point and looking for causes.

We know that I have leaky gut syndrome and unfortunately whatever damage may have occured while I was still eating gluten after getting ataxia, white leasions and myoclonus for 16 years. That's gotta leave a mark ...

At this point, I still have a diagnosis of CFS / ME due to OI, PEM and an upregulated immune system. I can't relate to not falling into the ME category from day one but I'm happy to hear others can.

Hi Enid,

sorry to hear that you can relate. Hopefully, we'll get to the bottom of all this someday .. hugs ...

tc ... x

Are you aware that OI isn't a requirement?

D. Energy production/transportation impairments: At least one symptom
1.?Cardiovascular:e.g. inability to tolerate an upright position - orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness
2.?Respiratory:e.g. air hunger, laboured breathing, fatigue of chest wall muscles
3.?Loss of thermostatic stability:e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities
4.?Intolerance of extremes of temperature
Notes:Orthostatic intolerance may be delayed by several minutes. Patients who have orthostatic intolerance may exhibit mottling of extremities, extreme pallor or Raynauds Phenomenon. In the chronic phase, moons of finger nails may recede.

Only one symptom from that list is required. Not necessarily OI or POTS.

I have actually just reread the ICC and the criteria is actually really wide open. Almost the only absolutely required specific symptom is PENE.

All the rest of the categories are so incredibly variable and open that they could provide so many incredibly variable presentations of this disease.

 

[PhoenixDown]

Which ever it is disease or syndrome, CFS or ME, these current labels are doing more harm than good. The labels are used as alternative words for behavioural problems, not real suffering, or imagined pain, or greatly exaggerated pain/fatigue.

The real world usage of these labels are destroying patient's lives and causing permanent damage through neglect and lack of appropriate treatment, even testing is withheld based on what these labels mean to the average primary care practitioner.

Change is needed as soon as possible, even without any medical break through or expensive research, a simple change in law and regulation could have a crucial impact for the millions suffering with these illnesses.

What these labels ultimately define is disrespect. Disrespect from family, friends, co-workers, doctors, social workers, and society at large. That's what really needs to change. How many cancer patients lose all their friends because the friends didn't understand it or don't believe in it? Can you objectively prove a cancer patient is in pain any differently than a CFS, ME, or Fibromyalgia patient? The answer is no, and yet they are believed because their label is respected.

There's no way you can turn the tides on these labels in a short period of time, I believe it will take decades and for that reason new labels should created instead and their seriousness backed by law.

 

[hixxy]

It's a nice dream (or maybe even fantasy) ... The situation is even worse if you throw MCS on top of it. What a laughing stock you become for the doctors then. The mask attached to your face when you visit the doctor is enough to destroy all hope of being taken seriously.