Blog - All I Want For Christmas Is A Good Nights Sleep

full blog here
https://cfs-survivors.org/blog/2019/12/22/all-i-want-for-christmas-is-a-good-nights-sleep/

 

If someone suffers from multiple neurological symptoms and PEM, then it is highly unlikely that everything is to blame on sleep apnea.

On the other hand, sleep apnea can be a comorbid condition on top of ME/CFS and could make everything much worse if untreated. Especially considering that people with ME seem to have problems with oxygen extraction. We need to get all the oxygen we can get, having untreated sleep apnea does the opposite. So I agree fully that it is very important to check for apnea and treat it.

 

Good luck to him. After I was diagnosed with obstructive sleep apnea in 1997 (having come down with ME in 1990), I was assured that my life was to get much better, and that my ME would disappear. Umm......no. Over twenty years later, and with faithful use of a CPAP machine, I'm much worse now than in 1997. So treatment for apnea is, after all, not the Holy Grail.

 

I hope the blogger does find much improvement in his search.

This blog demonstrates a number of issues non-disabled persons may not be aware of. Especially those who do not have Myalgic Encephalomyelitis (ME, also called Chronic Fatigue Syndrome - CFS); and those who do not have other misunderstood, dismissed, or untreatable, disabling diseases.

There are several issues facing persons with ME discussed in the author's article. A couple of these points are outlined below:


Although the article does not state which case definition was used for diagnosis in this instance, multiple, and overly inclusive definitions have led to many problems as further noted here.

1) The "absence of a universally accepted [case] definition" for ME ("CFS"), causes misunderstanding, and not infrequent misdiagnoses.

Five years ago a prominent U.S. government health research institution, the National Institutes of Health, reported on the state of life and all that surrounds it for persons with ME. This report covered many aspects, some of which have also been described in the blogger's article looked at here.

The NIH comments on the multiple and sometimes vague case definitions that hinder diagnosis, research and treatment for persons with ME:

Pages 2 and 16 of the 2014 U.S. "National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome", note the fact there is confusion due to multiple case definitions that have hindered progress. "Furthermore, the multiple case definitions for ME/CFS have hindered progress. Specifically, continuing to use the Oxford definition may impair progress and cause harm.Thus, for needed progress to occur we recommend (1) that the Oxford definition be retired..." : https://prevention.nih.gov/sites/de.../programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf

Further, here is a peer reviewed study including an examination of the Oxford case definition entitled: "How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?" https://journals.sagepub.com/doi/10.1177/1359105317695803

The NIH report also indicates: "Fatigue has been the defining symptom and focus of recent research on ME/CFS...(page 3); Although focusing on fatigue alone may identify many ME/CFS cases, it does not capture the essence of this complex condition. Prior studies may have inadequately excluded individuals with these distinct diseases, leading to delayed or conflicting diagnoses, contradictory diagnoses, contradictory treatments, suboptimal care, and inappropriate health care utilization." (page 5)

This article reports on corrected diagnoses for persons originally thought to have ME. Sleep apnoea is on the list: http://www.meresearch.org.uk/information/publications/misdiagnosis-on-a-grand-scale/


2) The patient's leave-no-stone-unturned search for mitigation or cure, which uses up much time, ill-afforded energy and finances, is well described in the blog.

The 2014 U.S. National Institutes of Health report about ME, page 4 reported on this very sad and all too common phenomenon : "ME/CFS patients often make extraordinary efforts at extreme personal and physical costs to find a physician who will correctly diagnose and treat their symptoms while others are treated inappropriately causing additional harm. Overall, the debilitating effects of ME/CFS can result in financial instability due to the consequences of the illness (e.g., the loss of employment, home)."https://prevention.nih.gov/sites/de.../programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf


Thank you to the blogger for describing some of the issues that greatly impact many with ME.

ETA: added lines for clarity.

 

Point #2 above,the leave-no-stone-unturned search for mitigation or cure is very destructive, not only for one's finances. This roller coaster of hope and despair harms the individual and families. It can leave a legacy of financial ruin for decades, perhaps generations.

Well-meaning, as well as unethical practitioners of all stripes take much advantage of people's faith in health care, and hope for improvement. A significant number of these practitioners may sincerely believe they know how to completely fix ME, or other diseases, but are sadly, especially for the pwME, very mistaken.