Search results

Excellent point about the average person out there may do pretty much the same amount of steps as pwME, or somewhat more, but not extraordinarily more. And, as you say, how can this similar amount of steps for pwME be called deconditioning, when the average person out there is not blamed for...

Yes, the numbers seem too high.

Ed Yong's article noted above is excellent. And, the descriptions pwLC give regarding their brain fog are disturbingly right on. For a long time I couldn't hold in my brain a phone number just after I looked it up, and went to dial the number. And, I couldn't read or understand longer or...

Yep. MRI was probably advised against in the NICE guidelines. I'm in Canada. I don't know if our medical system advised skipping brain scans for ME. Possibly. I think in my case and doubtless many others, the concept of hysterical female played a part. As well, it appears Canadian guidance...

As @rvallee says, Ed Yong can understand ME, while many doctors can't. (Or won't.) I have often wondered why listing symptoms of a neurological nature: constant dizziness, brain fog, poor memory, foot dragging, proprioception and balance problems, orthostatic intolerance etc., never led to a...

Do we have sufficient proof that exercise has a positive effect on neuroinflamnation etc.? Also, research noted on another thread here noted cardiac pre-load problems shared by ME and LC. PwME have reported many problems with exertion that is outside their energy envelope. Might pwLC have...

:laugh::thumbup: Excellent!

As @Tia said, most of us have tried psychological treatments early on. I did. It added up to years of counselling with a few counselors, but I didn't recover. Also tried yoga for years, meditation, and relaxation exercises. Those didn't cure me either.

:thumbup:

Thank you @Valerie Eliot Smith for your tremendous advocacy. There seems to come a time when those of us who have long pounded the keyboard to try and bring about change, need to rest and regroup. Perhaps in time shifting to some other vehicle for change. Best wishes from a 38 year veteran of ME.

According to MEpedia, hair loss is an occasional symptom of ME: https://me-pedia.org/wiki/Hair_loss Like @BrightCandle, I had some initial hair loss, adding insult to ME injury. I had already been hypothyroid for a decade before the ME, so was taking meds, and my thyroid blood tests were fine.

Thank you to the authors for this. But a point about hair loss. The article says those with ME do not experience hair loss, but those with Long Covid do. Early on with ME, I had hair loss. This post has been copied and following discussion moved to Hair loss

This post has been copied and discussion moved from this thread: The key to demystifying long COVID-19 could come from studying another chronic condition : Article: Chicago Tribune: Leonard Jason Thank you to the authors for this. But a point about hair loss. The article says those with ME do...

Excellent info. Thank you @Adam pwme Ditto, wish it could be posted lots of places.

@Ariel Another article on a different thread on the Forum (I can't locate the thread), questions whether the virus we had is still with us, albeit very hidden, or has it hit and run, leaving our immune systems in over drive? I'm wondering if the first scenario is true. Especially as I sit...

@Jaybee00 Here is what I have found about this question in the Canadian Consensus Criteria Overview, page 5, point #5 Neurological/Cognitive Manifestations: "MRI studies reveal elevated numbers of irreversible punctuate lesions consistent with demyelination or edema, predominantly in the...

"honorable reason for the pain", I think that's an excellent way to put it. Beyond terrible that the go-to explanation for mystery diseases is that their psychological, or caused by character flaws - lazy, scheming etc.

Do these people never have pain? And good grief, walking is not a cure for FM, nor is it effective symptom management. I'd have to look it up again, but FM has symptoms additional to pain.

It's good these researchers are comparing risk factors in diseases similar to Long COVID, and finding glaring discrepancies.

I think the BPS Movement might use chronification to mean the volitional act of thinking oneself chronically ill.