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

[Wyva]

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

 

[Woolie]

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"

 

[Kalliope]

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

 

[Trish]

Funny error - granular fever instead of glandular fever.

Generally a good article, but a couple of quibbles in the section quoting Charles Shepherd:

Quotes (with my bolding):

And it is increasingly recognised that there is a lot of overlap between long Covid and ME.

The two conditions share many symptoms, such as activity-induced fatigue, cognitive dysfunction - what we call 'brain fog', pulse and blood pressure issues, pain, unrefreshing sleep, and balance problems.

Why do people keep playing down PEM as fatigue?

That said, long Covid is usually a double whammy: "Most of the people who have long Covid have also got problems from organ damage relating to the actual Covid infection of the time," explains Dr Shepherd.

"A lot of them have got heart, lung damage so in addition to their ME/CFS type symptoms they've also got breathlessness, chest pains loss of taste and smell, fevers, these sort of things."

My impression from the bits of research we've seen is that only a minority have significant organ damage. I don't think the numbers are established.
____________

This section about the new NICE guideline is disappointing, as it repeats two aspects of the draft guideline we challenged in our submission, and implies they are still going to be in the final version:

Dr Charles Shepherd has been part of the committee that produced the draft, which is now under public consultation, and expected to come in force around mid-August this year.

The guideline no longer recommends Graded Exercise Treatment, which is based on fixed incremental increases in physical activity. The prescription of GET for ME/CFS has been hugely controversial.

It instead highlights the importance of ensuring that people remain in their ‘energy envelope’ when undertaking activity of any kind.

It also emphasises that cognitive behavioural therapy (CBT) is not a treatment or cure for ME/CFS. However, it may be useful "as a supportive therapy" to improve wellbeing and quality of life.

We provided good evidence that the studies showed flexible incremental activity increase are not helpful, not just fixed increments, and we questioned the continued specifying of CBT as 'supportive' therapy. Both these aspects of the draft were, I think, compromises with the therapists on the committee and not evidence based and need to be scrapped.

It seems from what Charles is quoted as saying that this change is not going to happen, leading to the serious danger, as we, and I hope others, pointed out, that the same therapists now doing CBT/GET will just keep doing what they are doing, and relabel it flexible activity management and supportive CBT.

Apart from that, it's a good article!

 

[Kitty]

Why do people keep playing down PEM as fatigue?

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

 

[DokaGirl]

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"

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.

 

[DokaGirl]

Funny error - granular fever instead of glandular fever.

Generally a good article, but a couple of quibbles in the section quoting Charles Shepherd:

Quotes (with my bolding):


Why do people keep playing down PEM as fatigue?





My impression from the bits of research we've seen is that only a minority have significant organ damage. I don't think the numbers are established.
____________

This section about the new NICE guideline is disappointing, as it repeats two aspects of the draft guideline we challenged in our submission, and implies they are still going to be in the final version:

We provided good evidence that the studies showed flexible incremental activity increase are not helpful, not just fixed increments, and we questioned the continued specifying of CBT as 'supportive' therapy. Both these aspects of the draft were, I think, compromises with the therapists on the committee and not evidence based and need to be scrapped.

It seems from what Charles is quoted as saying that this change is not going to happen, leading to the serious danger, as we, and I hope others, pointed out, that the same therapists now doing CBT/GET will just keep doing what they are doing, and relabel it flexible activity management and supportive CBT.

Apart from that, it's a good article!

"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.

 

[DokaGirl]

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.

 

[Ariel]

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.

 

[JemPD]

Why do people keep playing down PEM as fatigue?

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.

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.

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.

 

[rvallee]

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.

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.

 

[DokaGirl]

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.

 

[Sisyphus]

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"

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.

 

[Mithriel]

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 ....

 

[DokaGirl]

@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.

 

[Woolie]

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.

 

[Michelle]

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?"

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

 

[DokaGirl]

@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.

 

[bobbler]

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.

In the sense it’s utter exhaustion

I think people think that you can push thru it but they don’t get there is a point where you actually not only can’t move but are knocked out eventually even if you did so - and if you keep eg trying to get up for work then your alarm has to get earlier and earlier because it’s takes hours to force and cajole said body up shh no d awake , except you then realise that the less sleep from doing so means you are in a can’t win

this is important because those with fatigue can do something vs eg if you muscle had snapped . For us we then can’t eg eat our dinner later. Literally.

I think people are led to believe that they could keep cajoling us through each task not that if we use it early in the day because someone ‘showed us’ look you can go up those stairs then literally the other more essential stuff CANT get done. If they push to force that then it’s four days of doing nothing being out of it later.

it’s that acceptance of ‘can’t’ that seems to be hinging on people who want to call it fatigue because they think it is’ vs what we mean in PEM ie when it accumulates enough to crash us in particular. They are different worlds.

I’m finding it very difficult to feel sure I’m properly heard on what it involves because even when I communicate it perfectly THAT is something people secretly hold on to like some caveat they rarely talk out

and yes it comes from the physio/ot side if things completely misunderstanding BOTH concepts I think. Simply because they simplify something that’s different to the ‘can you lift that arm and I’ll measure the angle it can make’ type thing they think they get from eg stroke rehab (which I also don’t fully understand). I suspect pseudo-measuring as a comfort has a lot to answer for in some of this

 

[bobbler]

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 ....

Yes and they don’t seem to get there us fatiguability of body parts and talking and I’m pretty sure collapsing and OI worsening is more like fariguability due to being ‘more ill’