Fatigue, Pacing and PEM Management | Lessons from ME/CFS - With Dr Ben Marsh

"They don't see the preparations, they don't see the aftermath." This. This, so much. I think it might be why at least I, and others in my position that I have talked to, struggle to get proper healthcare. They don't see anything in the scans and the tests. They just see the window where I am calm, well spoken and is functioning enough to sit in a chair and explain how hard something they can't see is. They don't see how it took me days to prepare and how I the day after will lie in bed and be physically unable to lift my arms. Everyone who treat people with Long Covid should watch this.

Another ME/CFS symptom can be intolerance of (especially loud) sounds or music or the presence of too many people in a room. Multiple stimuli can be a nightmare causing confusion, irritability and exhaustion. Pacing involves being aware all of these things and essential for any quality of life.

I just want to express my thanks for this video, especially to the two speakers who may well suffer afterwards but I hope not. I could not agree more - covid is a virus and yes it may affect some organs in some of us, maybe because it's more nasty, but it still is a virus and I see myself as a post viral fatigue sufferer and long covider. Given there are so many of us now I actually hope that we will raise awareness and thus help previous ME sufferers by gaining research and exposure. They were ignored for too long and we are in it together.

Well I'm very sorry that the doctor s have fallen ill, I do feel validated that my chronic fatigue, long Covid and all the rest, are finally getting medical attention. Because the doctors are credible sources, they are taken seriously.... Unlike the thousands of sufferers without a medical degree. Thank you Jez, for being the light at the end of my tunnel! I'm so happy to find out you're not a train, lol.

I wish my GP would watch this! I was advised to do GET and engage with CBT just 2 days ago. When I mentioned my heart rate rises to 120 bpm on standing he dismissed it as anxiety. Hopefully such articulate advocacy will eventually filter down soon. And of course thanks for all your doing, a literal lifeline.

I’ve had ME/CFS for 23 years and have found very little help within the medical profession beyond the diagnosis. My GP was supportive and sympathetic but had no practical advice. However his initial description of it as starting everything from physical exertion to illness symptoms from a position of physical bankruptcy reassured me he knew exactly what it was like. Much of my help came from a homeopath, an osteopath and my own research looking for boosts for immune systems. I was not given tests for vitamin or mineral deficiency and am grateful to COVID for the lateral thought we now see on management and treatment. Listening to this is so validating snd so familiar, thank you Dr Marsh, we need more spokesmen like you.

Thank you Ben and Asad for your time and energy in doing this, and Gez for your continued efforts.

The 72 hour cycle is what makes it so hard to establish what the triggers are on an individual level.

I am going through this as well and was diagnosed years ago with CFS. It is terrible because no one understands how debilitating this disorder is. I find myself with no support as I was always the caretaker of everyone else. Unfortunately, I have been abandoned by 'friends' and family (even I do not ask them for anything...it seems they do not like 'unwell' me as I am of no use to them anymore.)

I have Long Covid and my remaining symptoms are the same as what this discussion covers. Thank you for sharing this.

I don't seem to have any PEM. My fatigue can disappear for weeks and then reappear. But honestly, it's nowhere near as bad as it was last summer. Last summers fatigue made it really hard to even try and get dressed.

Another excellent discussion and thank you again to all involved. I really don’t know how I would of survived the last 9 months of Long Covid without watching your channel Gez. The video’s have been a fantastic source of information and support to me. In fact the only information and support I’ve had!! Thank you so much for everything you have done and are continuing to do. 😊

Thank you to both of these doctors for giving up their time and energy in order to provide further understanding of the physiological basis of ME/CFS, and long covid, and the dangers of graded exercise therapy.

I'm not even 10 minutes in and I'm ready to burst into tears. I'm feeling hopeless. I don't want the rest of my life to be having to pay for any exertion. It's summertime here and I love to swim. I end up wiped out for 24-36 hours just from leaving my house. 🥺

I have had long haulers since March. Ive been doing Lots and lots of research on how to get well, or atleast feel somewhat better. Acupuncture has really made a difference for me. I've been there 6 times so far and my body aches have gotten so much better, also my sleep has improved. It also helped with the brain fog! Still working on the energy and my episodes of "crashing". I've also taken 2 doses of ivermectin. I've heard that it has been effective towards getting rid of long haulers. There is a big difference between now and March in how I feel! I just thought I would share what I've been doing incase someone else is looking for suggestions.

Thank you for this interview! It is so debilitating to experience these symptoms and to have them acknowledged and understood is helpful.

To describe ME/CFS as only fatigue related shows an ignorance of the condition which typifies the deafness sufferers have experienced to their symptoms and problems. Thank you both for recognising that there is more too it.

Thank-you Ben and Asad for this interview. After 20 yers of this illness I just hope we can prevent so many others from suffering the same fate. Until we can find viable treatments, pacing is key.

He had 12 months after the initial viral illness during which he was able to function normally at a high level. In my case I only had about 7 weeks where I was able to function, but all the while feeling that something was very wrong. My timeline as follows: End of FEB 2020: Flu-like illness, after 4 days recovered 2 Days later: Sudden insomnia, feeling unwell again Next 4-5 weeks: Lots of fatigue, malaise, other dysautonomia symptoms Following 6-7 weeks: Partly back to office, gradual improvements, but still poor sleep and other symptoms Then I crashed with severe insomnia, worse dysautonomia, PEM, the whole lot...... Now 2.5 years later I'm a little better, but far from recovered.

Thank you Dr. Marsh For your courageous presentation. Dr. Kahn, your questions were excellent, and as always thank you, Gez, For your unrelenting efforts at keeping us informed.