ME/CFS isn't chlamydia pneumonia. It also isn't a vitamin deficiency.Disagree Read the posts I gave
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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ME/CFS isn't chlamydia pneumonia. It also isn't a vitamin deficiency.Disagree Read the posts I gave
I think that is trueNutritional supplements and diet can help you when you have clear deficiencies (e.g. B12 folate etc), however if you routinely use more energy than you have they won't make a noticeable difference.
I posted two people that got better one with antibiotics and another with a B12 therapyYou are unlikely to find a self hacked cure using alternative therapies but you may be able to improve your quality of life ( by reducing the impact of crashes, improving cognitive stamina, gut problems etc) and perhaps slow the decline.
That is useful Thanks Do you swim or do yoga?I keep my heart rate below cardio and in the lightest zone (Fitbit call in the fat burn zone) if my heart rate goes above 100 I slow down, if it goes above 120 I stop and rest.
Makes senseWhen you pace properly you still get things outside your control affecting you such as pollen count, temperature, unforeseen drains on your physical and cognitive energy, but it's miles better than the boom or bust.
Disagree One person on another site use antibiotics for a long standing bacterial infection the other used B12 therapyOf the cases that spontaneously remit there is no understanding as to why some do and others do not.
Do you know exactly what CFS is?ME/CFS isn't chlamydia pneumonia. It also isn't a vitamin deficiency.
I know what ME/CFS isn't, by following all of the research. If it was a simple infection or deficiency, the cure would be widely known by now. Symptoms being caused by something else which is diagnosable would explicitly exclude a diagnosis of ME/CFS.Do you know exactly what CFS is?
How do you know infection and vitamin deficiency is not part of the problem?
Disagree One person on another site use antibiotics for a long standing bacterial infection the other used B12 therapy
CFS seems to be a bucket in which a variety of conditions are dumpedI think part of the problem is the fact that many other diseases can be misdiagnosed as CFS
Yes that would be interesting to knowWe can only know whether the person genuinely recovered by following up in 10 years or so.
Yes it seems to be that wayThe current research does not indicate that low b12 is the cause of CFS/ME although many have low levels and some kind of block in their B12 folate metabolism
Only when it's abused by lazy doctors. The core symptom should be post-exertional malaise, where relatively normal or small amounts of activity trigger a delayed reaction. This doesn't happen with infections or vitamin deficiencies, and someone with those problems, and no PEM, has been misdiagnosed if they claim to be an ME/CFS patient.CFS seems to be a bucket in which a variety of conditions are dumped
You seem to think that exercise can help you, despite that you describe having something that sounds a lot like PEM. The one thing that is certain in ME/CFS is that exercise harms us. That is the very definition of ME/CFS. Attempting to exercise your way out of exercise intolerance is a form of self-harm, even if that's not what is intended. And promoting exercise as a possible cure or treatment might encourage other patients to engage in the same self-harm. I know it's hard to break out of the mind-set that exercise is a cure-all, or at least beneficial and harmless, but biomedical exercise intolerance is the hard and fast exception to situations where exercise is good.you seem to want to fight Valetin I can't understand why
No, ME/CFS is a disease which features many symptoms. Chronic fatigue is a single symptom. The cause is unknown.My understanding is CFS is symptom not a cause
No I don't practice yoga or swimming. Yoga is just painful on my joints and I find it difficult getting up off of the floor once I'm down. Swimming I avoid, mainly because I don't like it or the risk of infection ( I am plagued by skin infections and these take 8-12 weeks to clear so not worth it for me). The Fitbit isn't water resistant but other makes are I belive.CFS seems to be a bucket in which a variety of conditions are dumped
Yes that would be interesting to know
Yes it seems to be that way
I asked if you practiced yoga or swam if so do you use a heart monitor while doing that?
Yes, this has happened to me too a lot in the past so now I have learned to avoid it as much as possible. You cannot recover when you keep crashing.
I agreeEasy to say but work and life prevent this for me and I'm sure many people