Pacing for people with severe ME/CFS

This thread has been renamed to include general discussion of pacing for people with severe ME/CFS as well as the leaflet linked in this first post.

25% ME Group pacing leaflet (among other things, it differentiates between CFS and ME)

https://25megroup.org/download/1796/?v=3222

It ends:
---
The evidence which shows that some CFS patients are merely deconditioned and can be restored to health through GET & CBT is based on patients who do not have M.E. None of the various cardiac, cardiovascular, immunological, neurological, cognitive, muscular and other abnormalities present in ME sufferers which cause the high level of disability associated with M.E. It should go without saying that treatment of one disease cannot be determined by studying a completely different and unrelated patient group.
---
I'm not convinced.

 

So counter productive this distinction between CFS and ME and the assertion that such as GET or CBT is relevant to CFS.

There is no evidence than CBT/GET helps anyone anywhere on the ME/CFS spectrum and good evidence that it can be harmful to people anywhere on the spectrum. Further we have so far no clear epidemiological evidence or biometric data that distinguishes empirically between any sub groupings within ME/CFS.

I understand it can be hard to see mild ME/CFS and very severe ME/CFS as the same same condition given how differently they look and feel, but having personal experience of both I believe it is a rational position to see them as part of a single continuum.

 

It's a shame that that paragraph is added to the end, as the rest of the document has some useful information.

eta:
In its defence the document was written in 2016 and the title is
"Rest, Pacing and Stress: What Every ME Patient Should Know"

so it's not specifically aimed at those who are severely affected, it reads to me more like for those who are newly diagnosed.

 

Same experience. I agree.

 

I'm not sure about the continuum theory. Will consider further.

My understanding is whether it was accidental or not, the term "CFS" conveys this disease as of little consequence, as well as short-lived. There were designed, and redesigned case definitions that eliminated some of the more biomedical/evidence-based features of this illness. Why, is up for grabs, but we can see not all physicians agreed. Hence the Canadian Consensus Criteria in 2003. Which does use the term "ME/CFS".

ETA: and the MEICC published in 2011.

ETA: Spelling correction

 

I agree. If they want to disassociate themselves from the morass of CBT/GET research, then fine, that’s understandable. But if they expunge CFS then they also lose the >5,000 biomedical studies done on patients diagnosed based on CFS criteria, eg the widely used CDC criteria, while simultaneously claiming these same research findings to characterise ME, probably citing the very same studies.

 

My experience with the CFS label, and the case definitions in the 1980s and 1990s, was that they in no way reflected, or covered many of my symptoms. I would get a polite, but puzzled look from my health care providers when I recounted symptoms not included in the thinly detailed CFS case definitions. This only served to make me seem psychologically challenged. Like I was imagining all these weird and not wonderful symptoms.

"Funny" that many, if not most of my cohort shared a lot of the same symptoms. This was before the days of FB etc. I've always wondered if doctors were ever puzzled that their CFS patients each shared so many similar symptoms, and that several of these symptoms were not listed in the case definitions of the day.

When the CCC came along it opened up, at least for me, information, guidance and relief. A breath of fresh air. Something to refer to, instead of sparsely detailed mini booklets on CFS from government agencies.

 

the suggestion, for some severe m.e. at least, of pacing as
management-ey [metaphorically keep track with a clipboard,
known energy ceiling that acts as cutoff value], does not
feel right to me.

i can't articulate this well, however. i might be alone.

am i also the only person for whom:

> Using pacing, you can live your life according to a plan,
rather than in response to symptoms, giving you a sense of
managing your illness, rather than illness controlling you.

is cringey? it sounds like promotion for uk professions
that i do not want to talk about or videotapes plugged on pr
many years ago with the assertion that you don't want to get
better if you don't shell out 200 usd for them.

probably i am being picky but i could not read more so
idk if it had disclaimers. i can't plan reaching arm out to
grab food (severe executive dysfunction or something
similar).

following gurus' "if you don't master x, x will master you" stuff according to a plan is right for me? is it time to be guided by an energy management specialist who will tell me when to go to the bathroom even though i cannot do so?


am i push-crashing? am i pacing? i have to rest before and
after doing things and not overdo things. but i don't have
lots of choices. i am overdoing even when i am doing eat,
rest, medicine, bathroom.

complex schemes of choices and management strategies that i
can't even read or make sense of, much less implement, is
alien overhead to me. i guess i am the only one who is like
this? idk. maybe i am doing my life wrong?

i am never ok below a threshold. does this mean i don't
have pene? are other severe able to do this stuff?


> The contrast of push and crash vs. pacing suggests that
our symptoms are not random, but rather due in large part to
variations in our activity level.

my symptoms are not "due in large part to variations in [my]
activity level". they exist even without any variation. they get worse if i do things but also if i get overstimulation stuff etc. and that is not what is being said here.

are most pwme ok if they are below a threshold? i fit
meicc++ quite well. but i feel really excluded here.


it is true that if you have the disease, you can be
extremely sensitive to environment and lifestyle changes,
but the disease is not due to failure to adopt lifestyle
changes, even pacing. imo that should be stated.
otherwise it is a bit like a reversal of the arrow of
causation.


also, leading with push/crash nomenclature might be
problematic, as it is used frequently by perpetrators to
blame the disease on lifestyle, as if it were fundamentally
[1] a hangover or mild altitude sickness type thing [2] that
most people would experience [3] if they didn't ever think
about [and need help with] changing basic aspects of their
lifestyles like stopping going to dance clubs or something
else dumb and obvious.

that keeps the m.e. = trivial myth alive. it also keeps
severe m.e. unimaginable. literally.

you do not get severe m.e. symptoms from such things as
going to dance clubs.

it wasn't meant like that, but when it is combined with the
pep talk, i am surprised to see it from this org?


i am unable to articulate the alienated feeling i have and i
suspect largely inability to use the info. from the first
few paragraphs. doesn't feel entirely relevant. maybe just
me. it is the org for severe after all. they know their stuff?

i clicked on the pamphlet precisely because it is that org. even though... i can't do facebook and they have no
forum or mailing list.

i feel alienated for some reason.

 

Thank you @Trish for talking about est. a baseline, and then being able to expand your envelope. I have never been happy with this message. It makes me feel criticized, as in I am supposed to have accomplished this somewhere along the way. ME is not something with a simple fix.

ETA: deleted some for clarity.

 

what is one supposed to do to meet the conditions of this mysterious word pacing? i have to rest before and after. i can imagine it meaning don't overdo. and also i can imagine it meaning bounce around on the moon.

i can imagine it meaning, soldiering through it [or "just turn your disease off for me for a few minutes ok?"] can make you worse long term and short term. which evreybody needs to know.

[that would be even better advice except when newcomers do not get told their diagnosis for literally 40+ years. and if it were not combined with the assertion that subsets should exercise with some possibly dodgy provisos.]

i am not convinced i have an envelope, a place to send it to, or the ability to start or complete the mailing task. this threshold thing i'd like clarified a bit. seems many have envelopes. what is their functioning /below/ those envelopes?

can being vertical push them above them? what about overstimulation with tiny amounts of noise or light? what about somebody angry or seeing a bad media article?

[i still wonder about the accuracy of activity/exertion per se for the focus concept. as in
- https://www.s4me.info/threads/does-...t-exertion-is-the-correct-focus-concept.6059/ [this is the original post that some got a little confused by] and
- https://www.s4me.info/threads/does-...s-the-correct-focus-concept.6059/#post-188444 and
- https://www.s4me.info/threads/does-...s-the-correct-focus-concept.6059/#post-188453 and
- https://www.s4me.info/threads/does-...correct-focus-concept.6059/page-3#post-299163]

 

Anything involving a base line activity is impossible for very severe ME, as any theoretical baseline is below the level of activity necessary for sustaining life, and even being a passive recipient of care can trigger serious negative consequences.

Anything on pacing must allow that life and the universe may interfere with establishing a base line and for those with severe and very severe ME any baseline is likely to be impossible.

Is the problem that services virtually never support severe ME, for whom outpatient based services are inaccessible, and so do not know it exists, or is it that pacing is only possible for people who are able to be more active? Also people with mild or moderate ME may also find it difficult to image the limitations of severe ME, so perhaps are too willing to accept information that excludes others more severely impaired.

[added - Anything on activity management, including pacing, must address not only what the person with ME might or might not do, but also what external support is necessary for them to achieve anything approaching a sustainable existence.]

 

I'm never very comfortable with documents for which no author's name is given. But I was curious about who had authored this.

I put the first paragraph into Google, and up comes this site:

http://cfsselfhelp.org/library/pacing-vs-push-crash

and an article by Bruce Campbell

Pacing vs. Push and Crash

By Bruce Campbell

(From the series Pacing: What It Is and How To Do It.)


The article on the 25% ME Group has been based on the content of this Bruce Campbell article. There is nothing in the PDF to connect it to Bruce Campbell or to Vicki Lockwood, who wrote this section:

My Energy Bank Account

http://cfsselfhelp.org/library/my-energy-bank-account


The site belongs to: ME/CFS & Fibromyalgia Self-Help Program, Palo Alto, CA 94303

--------------

So, did 25% ME Group obtain permission from Bruce Campbell to reuse his content? And if they did, why did they choose not to include something like, "Based of the articles xxxxxx by Bruce Campbell and Vicki Lockwood, with permission of the authors etc?"

 

I've just checked the 25% ME Group's page for Patrons, Trustees, and Advisers. Dr. Byron Hyde is listed as a Patron but Bruce Campbell isn't listed as a Patron or Adviser.

The last paragraph I haven't been able to find on any other sites. The rest of the document appears to have had the original source's references to fibromyalgia, and also to "CFS" and "ME/CFS" stripped out (25% ME Group does not use these terms).