Cort Johnson kindly published a piece I wrote – more of a manifesto – on my reflections on advocating for people with very severe ME/CFS. This piece struck a chord for many. There are many areas needing attention – I hope to work with others on some of the suggestions I outline in my article below.
I will admit to feeling so hopeless about many aspects of advocacy. Changing the narrative in mainstream medicine about this disease seems increasingly difficult. Consider the new systematic review draft report for Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) published by the Pacific Northwest Evidence-based Practice Center, which reviewed nearly 5,000 articles and 66 trials. While this may sound like a positive step, it is not because it is devoted mainly to graded exercise and CBT. The report concludes:
“Evidence on effective treatments for ME/CFS remains limited. Although graded exercise and CBT were more effective than inactive controls in improving fatigue, function, and other outcomes, the magnitude of effects was small to moderate, and methodological, and other limitations (imprecision, inconsistency, uncertain generalizability) precluded strong conclusions. Other therapies were not shown to be effective or require additional evidence to verify
effectiveness. Non-ME/CFS conditions were common in patients presenting with fatigue.”
I can’t help but feel we are doomed; Soon, the UK will have new guidelines that advise against graded exercise, whereas here in the US, we are losing this battle. We need to submit comments on this report.
While I will continue my advocacy efforts at this level, I will focus on ME advocacy organizations and the US ME/CFS Clinician’s Coalition. None of the mainstream advocacy organizations have a statement that comes right out and says exercise is contra-indicated in this illness. It makes no sense how we have a growing literature on energy metabolism impairments, yet our organizations won’t go the mat for us. Same with the clinicians – many discourage their patients from getting a 2-day CPET yet refuse to make a statement about the harms of exercise as a treatment, quite a double standard. Likewise, the severe/very severe end of the spectrum is not accurately represented or represented at all. If you don’t believe me – look at Solve and OMF and tell me if you can find anything that discusses the severe end of the disease in a meaningful way. If anything, the more severely ill a person becomes, the more likely, they will receive only lifestyle advice.
When those on the outside – family, medical professionals, etc. – see these materials, it is easy to conclude that we are all a bunch of malingering nut job hypochondriacs who don’t know what is best for us.
Likewise, I take issue with the Clinician’s Coalition, while at the same time, I am immensely grateful for our ME/CFS clinicians. However, I suspect that they turn a blind eye to the more severe end because they rarely see these patients. They are too poor and sick to travel to them.
Personally, as someone who advocates for very sick people in the heat of the moment, I want to work with the Clinician Coalition to develop concise documents that describe severe/very severe ME and the unique care needs. This document needs to state that physicians wrongly conclude that severe/very severe ME have a psychiatric condition, such as an eating disorder or Munchausen’s. We need a differential diagnosis blueprint and materials that patients and families can provide to doubtful physicians. We also need more research and information on malnutrition, weight loss, and, food and medication intolerances.
The needs are so immense. Please read my piece if you are interested in hearing about some of the other ideas from my efforts to advocate for friends with very severe ME/CFS.
Frozen in Amber 