My magic wand would be to stop talking about exercise and refer to activity or exertion, so poorly patients do not imagine they can exercise themselves to recovery. I would have an early way to test and distinguish those who are harmed by exertion so they have a better prognosis. Those that have a proper convalescence and don't keep harming themselves with boom and bust and have a chance of improved outcomes long term
I pushed myself on GP advice to return to work after a viral illness 24 years ago and I am still sick from that deterioration today. People in early stages of recovery need wrap around care to the extent they do not repeatedly re trigger their symptoms through the exertion of daily living. Especially,those with children and loss of income need extra support
I've always thought I've had some autoimmune condition. I had Epstein Barr at one-point. I have nearly every symptom on this condition. I have over the last few years debilitating fatigue after physical activity. It is always delayed by a day or two and last for about a week. Brain fog, flu symptoms with nazal drip and chronic cough, etc etc. Heat exaserbates the condition. Its ruined my career and is taking a toll on my marriage. At least I know this is a condition and I am not crazy or lazy. How can I get tested from someone knowledgeable about this condition.
I would have liked it if you’d spent less time sharing thoughts with each other (“we know there are mistakes being made with ME, and now see them happening again faster”) and more time explains things to us. What mistakes?? What advice from doctors is so wrong regarding ME/CFC? What lessons should we long haulers take? Describe what you are talking about!! There’s lots of talking, yet hardly any practical information here.
Hi JS. I didn't watch the video, but your comment caught my eye, and I understand and can guess from your frustration; I've had ME for 24 years and know what "mistakes" they surely are referring to. First and worst mistake would be trying to push through your fatigue, cognitive fog and other physical symptoms. Instead: Enforced rest, extremely slow pacing for the activity you can manage - like, cut down to 25% of of what you THINK you can do; rest when your body tells you to; it's too late when you're dragging your bones up the stairs to your bed or couch. When you start to feel a little better, you tend to push, but it ends up in a "crash". Don't fight it; rest more, and don't keep pushing, just take everything easy. It is very hard, but beneficial in the long haul. Simply put, it's your body telling you it need to recover more, that there's still stuff going on at the cellular level that needs to try to heal. Related to advice from doctors: Most doctors will tell you to gradually get back to your regular exercise and activity. This can be detrimental at any point in ME/CFS if done too quickly, but worse in the acute early months, when patients don't really know what to expect. Listen to your body; it knows better than than your doctor. When those of us with ME are finally able to read the old literature, we find it is those who constantly push through the exhaustion and other symptoms who end up with the worst prognosis. If you search online you can find more detailed suggestions at sites like ME Action, Solve ME/cfs, Open Medicine Foundation, Workwell Foundation mentioned in the video, and many other places, lots of helpful sites in the UK, some in New Zealand and Australia too.
