4 ms·

Just wait until the professionals start referring to psychological help. Chronic health problems from previous infections do not exist in modern medicine. Besid

by loopz 6y ago

Just wait until the professionals start referring to psychological help. Chronic health problems from previous infections do not exist in modern medicine. Besides there's very little professional help to get. I believe we can reasonably expect this to develop into massive amounts of people unable to work due to ME/CFS. The effects may last for life. There are courses where they tell you to lie to yourself and say you're healthy ("lightning process"). The breaking of personal boundaries can unfortunately for sufferers lead to permanent health and capacity reduction, so take with big grains of salt wether it's worth the risk. What may work, if it's ME/CFS-like, is to find personal limitations and avoid too much toll, ie. less or no stressful exercise. Then find ways to live healthier and gently up those boundaries without exertion, avoiding possible permanent regressions for life. Of course also seek professional medical help, but always evaluate what kind of help one is getting where and what the consequences are. Life can and should be joyful and one should shed fear and anger, but be sceptical of claims (even this one), and do due R&D.

PaulKeeble 6y ago
Since they classed the first known outbreak of ME as mass hysteria its been constant gaslighting for sufferers for 70 odd years. Even now this article is written as if ME/CFS doesn't exist, as if doctors in the UK are completely baffled, but we know what this is and it will have the same hallmark Post Exertional Malaise but its not even mentioned in the article. The NHS doesn't recognise the international definition of the disease and continues to harm patients that show up with it every day. The Chinese after SARS didn't have issues calling it ME/CFS, around 10% of the SARs sufferers still suffer with ME/CFS to this day, they had papers calling it what it was very early on. The NHS however is going with "no clue". We do know a lot more than we knew 2 years ago. We know the condition swells the brain in the central and front regions and that explains the memory problems, headaches and coordination issues. We know that sufferers have virus RNA in their body and in their brains, so its possible its just an ongoing infection but it also appears to be partially replicated in cells. We know that patients cells produce down to about 25% of the energy that a normal persons cells do in their mitochondria and it is at least partially to do with the Calcium ion channel being turned off with a gene switch. A sufferers plasma will shut down someone else's cell too so its probably a signal of some description in the immune system soup. What we don't know is if any of this is the root cause of the condition and there is frighteningly small amounts of research being done for a disease that can be as debilitating as MS. We know a lot about how its not Psychological now and research is getting funded at last. But its been 70 years of "its all in your head", nothing about this condition paints doctors and researchers at all in a good light.

by loopz 6y ago

PaulKeeble 6y ago

Since they classed the first known outbreak of ME as mass hysteria its been constant gaslighting for sufferers for 70 odd years. Even now this article is written as if ME/CFS doesn't exist, as if doctors in the UK are completely baffled, but we know what this is and it will have the same hallmark Post Exertional Malaise but its not even mentioned in the article. The NHS doesn't recognise the international definition of the disease and continues to harm patients that show up with it every day. The Chinese after SARS didn't have issues calling it ME/CFS, around 10% of the SARs sufferers still suffer with ME/CFS to this day, they had papers calling it what it was very early on. The NHS however is going with "no clue". We do know a lot more than we knew 2 years ago. We know the condition swells the brain in the central and front regions and that explains the memory problems, headaches and coordination issues. We know that sufferers have virus RNA in their body and in their brains, so its possible its just an ongoing infection but it also appears to be partially replicated in cells. We know that patients cells produce down to about 25% of the energy that a normal persons cells do in their mitochondria and it is at least partially to do with the Calcium ion channel being turned off with a gene switch. A sufferers plasma will shut down someone else's cell too so its probably a signal of some description in the immune system soup. What we don't know is if any of this is the root cause of the condition and there is frighteningly small amounts of research being done for a disease that can be as debilitating as MS. We know a lot about how its not Psychological now and research is getting funded at last. But its been 70 years of "its all in your head", nothing about this condition paints doctors and researchers at all in a good light.