Cambridgeshire Live article: Cambridge Dad living with ME becomes so exhausted he can't walk downstairs

https://www.cambridge-news.co.uk/news/health/me-cfs-personal-story-20562798

Another local article with Dr Mark Harper, chair of the Cambridge ME support group. He seems to be doing a great job at reaching out. The article is quite long and first focuses on his own personal story with ME/CFS, then in the second half the general situation of the disease is mentioned too, as well as the similarity to long covid (discussed by Dr Charles Shepherd).

Mark Harper, 68, a retired physicist from Cambridgeshire, has shared his experience of living with the condition, which he has had since his 30s.

"I only shower once or twice per week because I can’t afford the energy. If I have a shower- that’s it. I can’t do anything else for the morning," he says.

"I can manage 3 or 4 hours a day upright, and the rest of the time I have to rest. And I am one of the less ill people with ME."​

Dr Mark Harper also talked talked a lot about ME/CFS politics, the current situation of GET and CBT as a treatment for it in the UK, etc in this previous article: https://www.s4me.info/threads/possi...ovid-19-long-covid.14074/page-211#post-343141

 

Oh no, I'm worried the headline sets this up to be lampooned. Sounds like something from The Onion. "Woman becomes so angry with the internet that she resorts to reading a book"

 

A great article and interview! They've managed to include a lot of information.

 

It is annoying, but in this case it might just be that it's easier to explain it that way in a news article?

 

I haven't read the article yet, but had the very same impression of this concerning title. On the other hand, it is good to see pwME articles getting out there.

 

"Supportive" CBT. This always concerns me. The more zealous amongst these practitioners may expect great things from their therapy. And, you're right, some will just continue insisting this is a curative for ME. Same goes for "flexible incremental exercise." A nice workaround re the guidelines, unfortunately.

 

I think the phrase, "having a credit card with a 200% interest rate", is excellent. Many people can hopefully relate to that as a very problematic situation.

 

Am I the only one who does not really experience "fatigue" at all? I know it's easier to write "fatigue" than something else but I think of the term as a fiction partly created to serve those running eg "fatigue" clinics and CBT/GET.

 

10yrs or so ago he used to call it 'exercise-induced muscle fatigue' which drove me completely bonkers when i kept reading it in articles & on the MEA website.

No you're not.
Am i the only one who's sick of saying that i dont feel fatigued, i feel ill. It's a mess, because plenty of people with ME/CFS do experience fatigue i know, but there we are.

 

I did not have any of that serious level of fatigue until years into my ME, I'd say it took about 5-6 years at least, before that it was mostly neurological symptoms, brain fog, PEM, shortness of breath, dizziness, dysautonomia. I did have the normal kind of mild chronic fatigue since my teens, but that's completely different. Even in my first years of illness it simply was not a useful description for anything I was going through. It made me completely brush off this suggestion of "chronic fatigue" at first, simply an invalid framing.

But yeah fatigue is an optional symptom. That's seriously messed up when it's literally in the name everyone recognizes despite being incorrectly defined.

 

When well, I used to feel tired after several hours of cross country skiing.

That tiredness in no way resembled this continual burning muscle pain, weakness, constant flu-like experience, pre-syncope, short term memory problems, very frequent GI symptoms, joint aches, unusual headaches, and post-exertional malaise with minor exertion. The fatigue I feel is inextricably linked with all the above symptoms, and more. I would say fatigue, yes, but so very, very much more.

 

But it’s accurate.
“Can’t walk downstairs” is the crash state I strive to avoid but know is waiting for me should I cross an invisible threshold, whether voluntarily or buy some basic requirement of life. His comments about standing and showering mirror my experiences perfectly.
This guy has a real case of ME, SEID, GTFO or whatever we’ll be labelled next.

 

I don't really experience fatigue even now, it is feeling ill that keeps my from doing things. What I have always had is a sudden stop, either my whole body or parts of it, which can take a few seconds to hours to recover to what I was doing except very occasionally. This is different from the PEM which takes 3 days to appear.

If I have done far too much because of life circumstances I become very ill with what feels like immune problems. Then there is dysautonomia and POTS which are different again.

So, yes, I tell my husband I'm feeling a bit tired ....

 

@Mithriel

Yes, to sudden stop. I come to a point where I can't do anymore. But in a healthy person's world, I will have done virtually nothing at all.

 

When I first got sick in the early 90s, I got full testing for other things (before the CFS diagnosis). When the tests came back negative, the registrar in charge of my case says "well, its really difficult to find what's wrong, because your symptoms are nonspecific like fatigue".

And I replied, "But I never said I had fatigue, I said that I felt like I had a severe flu, which can go on for 2-3 months at a time, so bad that I'm completely bed bound".

He said "well, you say you can't get out of bed, isn't that the very definition of fatigue?"

I suppose having your back broken is also fatigue.

 

It's like saying the flu is merely a case of acute fatigue.

 

@Woolie @Michelle

General public health info on places like weather channels describes how to differentiate colds from flu. How ridiculous it would be to say one symptom of flu is the inability to get out of bed.