I Don't Have ME!

Just been to ME/CFS clinic and have been told that i don't have ME

Category:

People & Blogs

Tags:

• me/cfs
• chronic
• fatigue
• syndrome
• cfs
• disability
• neurological
• disorder

[dexhaven]

Progress is good news, I wish you all the best, and hope you can finally get some answers and treatments. What you have gone through has been terrible, it just shows the lack of medical knowledge in the medical profession. TC

[kaazoom]

Thanks for your support. I will be keeping everyone informed of my progress.God Bless.

Paul

[synapse131]

You keep stating this is a "fact" but acc. to who? I think you need to read the "Clinical and Scientific Basis for ME/CFS" ed. by Byron Hyde. There is a long history to the ME/CFS question that goes back before the 1980's (when "CFS" supposedly was a "new" disease entity.) ME was already defined as a specific nosological entity (with likely clinical subsets) in 1969.

[synapse131]

P.S., I have a database of at least a thousand articles that I have been collecting for the past 14 years. I haven't been limiting myself to ME and FM research as well; I've been looking a pain research, neurological research, sleep research, etc.

[synapse131]

I think you need to read something written by someone other than the typical propaganda heads which spout generalized hypotheses as though they were fact. There is a great deal of research that has found specific physiological mechanisms with ME that separate it from other disease processes. Just because an "expert" (and there are a lot of these) states a hypothesis doesn't mean that it is true. Whose research are you following? Wessely and Sharpe?

[synapse131]

If a micro-seizure compromising cognitive function, sleep, etc. is occurring in ALL patients in the main (ME) cohort (which appears to be so,) I would say that is a consistent physiological finding that sets these patients apart. The fact that GABA agonists (Lyrica and Neurontin) are anti-seizure medications is not a coincidence as is the fact that NMDA/glutamate antagonists (incl. GABA agonists) are the most successful class of palliative medications for ME and FM.

[synapse131]

Even the neuropsych studies have found a consistent pattern of brain dysfunction in which memory formation, attention and focus, etc. is compromised. The sleep dysfunction, the cognitive issues, startle reflex, etc. are all related to the micro-seizure (discovered to occur in all ME patients by EEG expert Frank Duffy.)  In essence, ME patients experience a "micro" absence seizure with alpha wave intrusion every several seconds which disrupts these functions.

[synapse131]

This demonstrates you ignorance (just like the folks who made the definition for "CFS"). Fatigue isn't even the major symptom. The pain and cognitive symptoms are much more problematic and it's the focus on "fatigue" that is allowing you to over generalize and "lump" when you should be "splitting." Dr. Light has demonstrated that ME patients have a highly abnormal and extremely lengthened muscle recovery (which explains why we have normal initial strength but NO endurance.)

[synapse131]

So Low Natural Killer Cell isn't an immunological finding? I'm confused. You might want to talk to Dr. Klimas about that or the many Japanese experts (there's a reason it's called low Natural Killer Cell disease in Japan.)

[synapse131]

What part of the picture am I missing? The "bias" towards specific physiological mechanisms is based on the research that is published in medical journals.

[synapse131]

@FallaciesDetective Right on the money.

[synapse131]

I've been studying the literature for at least 14 years and have been experiencing this illness for at least 19. The literature has clearly shown that diastolic cardiomyopathy is THE key element to the disease. A study was done which correlated the degree of cardiomyopathy with quality of life and there was an almost perfect correlation (the confidence interval was ASTOUNDINGLY high.)