Patient Perspectives on the Meaning and Impact of Fatigue in Hemodialysis: A Systematic Review and Thematic Analysis of Qualitative Studies, 2019

Patient Perspectives on the Meaning and Impact of Fatigue in Hemodialysis: A Systematic Review and Thematic Analysis of Qualitative Studies
Jacobson J, Ju A, Baumgart A, Unruh M, O'Donoghue D, Obrador G, Craig JC, Dapueto JM, Dew MA, Germain M, Fluck R, Davison SN, Jassal SV, Manera K, Smith AC, Tong A.

Rationale & objective: Fatigue is a highly prevalent and debilitating symptom in patients on hemodialysis therapy due to the uremic milieu, the hemodialysis treatment itself, and other comorbid conditions. However, fatigue remains underrecognized and the consequences are underappreciated because it may not be visible in clinical settings. This study aims to describe the experience that patients undergoing maintenance hemodialysis have with fatigue.

Study design: Systematic review and thematic synthesis of qualitative studies.

Setting & study populations: Patients undergoing hemodialysis.

Search strategy & sources: MEDLINE, Embase, PsycINFO, CINAHL, reference lists, and PhD dissertations were searched from inception to October 2018.

Data extraction: All text from the results/conclusion of the primary studies.

Analytical approach: Thematic synthesis.

Results: 65 studies involving 1,713 participants undergoing hemodialysis were included. We identified 4 themes related to fatigue: debilitating and exhausting burden of dialysis (bodily depletion, trapped in a vicious cycle of postdialysis exhaustion, vigilance and worry inhibiting rest, tiresome and agonizing regimen, and without remedy and relief), restricted life participation (deprived of time, managing energy reserves, frustrating need to rest, and joys foregone), diminishing capacities to fulfil relationship roles (losing ability to work and provide for family, failing as a parent, lacking stamina for sexual intimacy, and relying on others), and vulnerable to misunderstanding (being criticized for the need to rest and failing to meet expectations).

Link (Paywalled)

 

The NIH institute on diabetes and kidney disease is having a workshop on post-dialysis fatigue. The email from NIH said they were hoping for input from PwME/CFS.
https://www.niddk.nih.gov/news/meetings-workshops/2023/scientific-workshop-on-post-dialysis-fatigue

In looking at the agenda though I see that the section on lessons from Chronic Fatigue Syndrome is being led or presented by Dedra Buchwald.
This prompted me to look at a couple of post-dialysis fatigue articles and I found they mention CFS.
I suspect that given Buchwald's involvement, the organizers don't understand the difference between CFS and ME and don't understand that fatigue and PEM are not the same thing by a long shot.....

From what I understand from a kidney patient, some people do experience (sadly) extreme exhaustion after dialysis with cognitive impairment as well but the trigger is dialysis (in some way). Additionally many of these people are not believed that dialysis triggers such symptoms.

 

I spent 20 years as a dialysis nurse and saw the fatigue every day, post dialysis. Big shift of fluid and electrolytes removed during the 3-4 hr. treatment, most patients ending up with low blood pressure/volume due to all the retained fluid removed.

Dizzy and staggering out of the clinic, home to bed, feel a bit better the next day. Repeat 3x a week. Not fun.

A whole workshop on dialysis fatigue versus what is usually on offer for ME/CFS ?

But then the US government is shelling out millions for dialysis treatments, so the decision is that this is important enough to warrant a workshop (and maybe is).

 

Full email posted here

In the same thread it was highlighted that not only is Dedra Buchwald part of COFFI, which is a collection of BPS 'researchers' who focus on fatigue, she is also one of the named authors of the yet-to-be-published publication that claims to list the "Eight major errors in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis".

 

Put plainly, medicine has made zero useful progress in understanding illness and symptoms, has no further knowledge than a century ago, or any point beyond. In fact, is obviously unable to deal with the subjective nature of illness.

There seem to be two ways to solve this: objectifying the subjective experience, or trying to subjectively understand it from a detached perspective, aka empathy. Clearly neither work, it's extremely rare to be able to understand the subjective experience of others without experiencing it, and medicine stifles this entirely anyway, seeing no problem pretending that a few fake numbers from weird questionnaires represent a whole person.

So clearly the only way forward is to accept this lived subjective experience and work from there. It cannot be objectified yet, maybe it never will. Failure of empathy is built in human nature, it's not just a failure in medicine, only the people experiencing something truly understand it, this is universal.

I've rarely seen such a useless process as this. It clearly amounts to nothing, has not lead to any knowledge gain at all, in fact has clearly made things worse. And somehow it just keeps plowing along because the academic model of research rewards publishing lots of useless stuff far more than it rewards breakthrough papers.

We need patient-first vocabulary and care. The idea that people who will likely never experience some subjective experience can understand it better than the people who do was always absurd, nothing works like that. We need real shared decision-making, or nothing will improve. The authoritarian model is a failure beyond the most basic stuff. Medicine needs humanity, basically. Illness and health cannot be objective anymore than justice or fairness, they are based on values we choose for ourselves, they are not found in nature and cannot be seen through a microscope.