I definitely have PEM, does that mean I have ME/CFS

[sam.d]

@JeanneD this seems indeed like the smart way to go. I've just booked my first consult with De Meirleir's clinic. Thanks so much for your reply here. Otherwise, I would have never gone for it.
I will definitely keep you posted on the results of my labs!

 

[hamsterman]

@hamsterman thanks! I'm in the same boat and recognize what you say (the randomness etc). It's only been a week since I "discovered" ME/CFS. Until last week, the physical degradation which I had been suffering from for more than 20 years was just a big mystery. I realize a lot of people on here are experts at ME/CFS and still haven't been able to achieve remission, which should really make me more pessimistic. Instead, I haven't been this excited and happy in years. That will probably subside in time, but it's been a blast discovering all you people who are finally pulling the curtains off of my illness. Not to mention discovering all kinds of symptomatic treatments which where hitherto unbeknown to me.

But yeah, as far as timeline, I've quit all social life almost 2 years ago, I've stopped leaving the house about 9 months ago (except for grocery shopping once every 2 weeks). So I've been extremely carefully pacing to combat randomness.

Yeah, I agree. I had known about CFS/ME and about Phoenix rising for a while..... but I kept saying to myself... 'I dont have CFS'.....definitely biggest mistake of my life. But you are right... now that you have uncovered the mystery... everything becomes so much clearer. In 2016, I was crashing pretty much weekly...I could barely think that entire year... but since then, I've been learning how ME works... I continue to crash less and less... I've only crashed 3 times in the last 6 months... and I've learned a lot from those 3 crashes, and know exactly what I did wrong in each of those instances.

 

[sam.d]

In 2016, I was crashing pretty much weekly...I could barely think that entire year... but since then, I've been learning how ME works... I continue to crash less and less... I've only crashed 3 times in the last 6 months... and I've learned a lot from those 3 crashes, and know exactly what I did wrong in each of those instances.

EXACT same here. For me it went on with the constant crashing from about spring 2015 until this summer. I lost a lot of time on account of inertia and brain fog. I was just not able to think deeply about the problem or research possible solutions. I already consider my 30's to be a lost decade.Very frustrating as you're supposed to be in the prime of your life! But I'm very hopeful now. The few tips that I've had on this forum have already been my biggest breakthroughs in years. Yesterday, I had the first full day that I could work with full concentration and no crashes after meals. Probably since 2005 or earlier. All as a result of @PatJ's Betaine HCL + pepsin tip

 

[sam.d]

Guys, quick question about my upcoming tests with prof De Meirleir.
Do I need to induce PEM before I go for my tests? Would that better help the tests detect what I have?

 

[PatJ]

Do I need to induce PEM before I go for my tests? Would that better help the tests detect what I have?

That sounds like a question for Dr. De Meirleir. I would be interested to hear the answer.

 

[Stretched]

Guys, quick question about my upcoming tests with prof De Meirleir.
Do I need to induce PEM before I go for my tests? Would that better help the tests detect what I have?

IMO, you might report your history but don’t change your current routine. You don’t want to induce a false positive.

As stated elsewhere CFS mimics many other illnesses. It’s nebulous in that it’s almost like you’ll know it if you’ve got it, at least if your symptoms carryon for a long time, e.g. six months or more.

BTW, In addition to crashes, most PWCs go through periods of feeling really bad, similar to a super flu. If you cycle through such periods you could use this as a ‘marker’ for determining that you have CFS, particularly if the symptoms remain relatively repetitive.