It isn't something I've personally experienced, but certainly after 25+ years hanging around ME/CFS online forums, I've seen a significant minority of people say that they experience exactly what you described. I don't know how many, but enough that it's definitely a "known thing" 🙂

@TabbyFan I find an eye mask also helps to signal my body that it's rest time - like sleep hygiene. I can't have a different physical place to go to to rest, as sleep hygiene recommends (I'm bedridden so I'm in bed all the time) but having some sort of ritual or signal that "this is rest time now" does seem to help. For me it's putting on my CPAP mask and eye mask. It helps me relax into properly resting psychologically

@Adventurous-Anne that doesn't sound normal, I think you should see a doctor in case you have an infection around the mirena or something. Hope you're ok!

@DramaticHuskie I hope all those appointments are nicely done, the folder found, and the PEM not too bad. 🌸

@river said in Mayo Clinic consensus document on ME/CFS:

I recently found this document from Mayo Clinic which provides a very thorough summary of everything you need to know about ME/CFS. It's by far the best clinical resource I've come across so far, and I feel like it should be required reading for any healthcare professionals we deal with, and for patients themselves if they have the capacity to read it.

I think it would be good to pin this to the forum, if admins agree.

https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext

I agree, the most thorough summary I have seen. Took me a while to get through it, but that was just my cognition, not the article. Reading through it, I am not surprised that the diagnosis is missed so much. If your medical practitioner is not up to date, you have no chance of an accurate diagnosis or treatment plan. I think pinning is a good idea.
As a side note, does anyone know why the term Systemic Exertion Intolerance Disease (SEID), proposed by the World Health Organisation (WHO) was rejected? Chronic fatigue is a symptom, Chronic Fatigue Syndrome is, based on the definition of Syndrome "a group of signs or symptoms" but not a true representation of the severity of the condition and waters it down a bit. In addition, because of early misinformation, CFS is often stigmatised as not real. Myalgic Encephalomyelitis (ME) is a much better (more validating) label, as shallow as it sounds because it is a more believable term than CFS. The same applies to SEID. Sometimes labels are a waste of time, but in this case, I actually think we should get rid of CFS because the perception of the label is generally negative. I don't care that people (non-sufferers) don't know what ME or SEID is because they will learn eventually. It also removes some of the confusion around the symptom of chronic fatigue, which can be a symptom of a few disorders or diseases.

I go junk food with PEM because I feel miserable and I am a comfort eater. Sigh. Not a good match with ME/CFS.

Also, if I am feeling faint I think my back brain thinks I might be starving and sends me lots of messages that eating something might make me feel better. (It doesn't. )

I do get hungry for protein foods also, just generally, and that does include fish.

I hope the supplements might work @river

@Jeshyr oh good idea with the sorbolene instead of soap, I was wondering if using a moisturiser might help break down the oils more - I'll give it a try.
And yeah, I would like to ask a doctor about it but unfortunately I don't have a GP currently who has the skill to deal with anything remotely out of the ordinary. I might try asking my CFS specialist instead

@gretch haha it's pretty lols. Sooo many adults would get tangly hair!

@river Yes, I'm right handed

@Andie When you say the change of seasons, do you mean that you struggle a lot with the cold?

Not sure if this is helpful but I found the Uniqlo Heatech range of thermals quite good. There are three levels of warmth. Good to layer with other clothes. Although taking layers off needs energy!

@andie What a great ME/CFS mantra. Such a kind and effective way of approaching this problem. 🐦

@emsarah absolutely! Here’s hoping the word gets around to more practitioners, so less of us experience such severe symptoms.

Bit of an update re the watch I purchased so I could do ‘on demand’ ECG s to assist treating cardiologist. That function was all it had going for it. I won’t mention the brand name here but it’s customer support team were unable to get some broken features to work for me.

Regretted purchase (only did so upon recommendation of cardiologist). The thought of trying to return a faulty ‘smart watch’ was too much!

Then my house mate reminded me that the retailer has a 3O day return if not happy policy, & I qualified for that😅They were absolutely easy to deal with and I replaced it with a different watch with on demand ecg function and other features that are truly smart 😍

It’s a lot of $ to outlay for something that can help manage me/cfs, so I thought it might help to know that this retailer at least, allows you to try for 30 days.

@river a family member of mine has fibromyalgia so lots of constant muscle pain. They got the top level Noa mattress (most padding) and added a thick wool mattress topper (fluffy kind).
From their experience I would recommend the online mattress route because you can actually try the mattresses for 3 months and return them if they are not suitable (this family member did it with the Eva mattress which was too firm and uncomfortable). Brands to also look at I think might be Sleeping Duck or Koala who just released new types.

@coco thank you for sharing, I’ve subscribed to her now. Looks really helpful 🙂

@iris yep that's why i was also worried as i am in that basket. Guess I got lucky!

Revisiting this thread I just want to add a little disclaimer and word of warning...
I mention moving the 10kg futon by myself...
Don't do that, please don't do that, get someone to help you.
Especially if it's a 38 degree day and you have no air conditioning.
That event single handedly propelled me into severe ME/CFS territory. I have not recovered.
(I say single handedly, it was definitely the trigger, but there was a lot of other stuff accumulating that led up to it... Even without that though, I think the same thing would have happened)

@river thanks so much for posting about this. I’ve just been trying to write things in my iPhone calendar each day but this will be much more helpful