Specifics of chronic fatigue syndrome coping strategies identified in a French flash survey during the COVID‐19 containment, 2021, Moncorps et al

Trish said:
I wonder whether they mean emotions directly related to being ill, such as feeling sad about losing out on normal daily life, fear of losing a job or home, anxiety about coping day to day, anxiety about triggering PEM, being naturally distressed by pain etc.

Or do they mean 'emotional lability' - that the disease itself makes one intrinsically more prone to having emotional reactions to things that wouldn't have made them emotional when well, or less able to cope with emotions.
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I interpret the second part of this ...

"Ways of dealing with the overall illness cannot be separated from those of dealing with associated emotional distress. The latter is probably consubstantial with unrecognised medical diagnosis"

... to mean: Emotional distress is an inevitable outcome of a disease that the medical profession do not even recognise for what it is, with all the additional emotional stressors that will put onto anybody.

I therefore interpret the first part of the above to mean: Because anyone in the situation of ME/CFS patients cannot escape the emotional trauma that gets put upon them, then dealing with the illness cannot be fully segregated from dealing with the trauma that can accompany it.

This will be true of many illnesses, so I suspect from the above that the special case they are making here is the trauma of a patient's illness not being recognised for what it is by the medical profession. There is no doubt that is a special case of trauma all on its own, not being believed about something that is extremely important to have believed.
 
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Merged thread

Article: People with Chronic Fatigue Syndrome Are Less Likely to Reach Out For Support

Key Takeaways
  • A study published in April suggests that people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are less likely to reach out for social support than others with chronic health conditions.
  • Treatment for ME/CFS often involves treating symptoms associated with it, like chronic pain.
  • People who contract COVID-19 may develop ME/CFS, which opened the doors for more interest in and funding for research.
During the pandemic, people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) were less likely to reach out for social support than people with other diseases, according to a new study.

The researchers from France sent out a questionnaire between April 15 to May 11, 2020, when the country was experiencing an initial COVID-19 lockdown to see how people with ME/CFS and other conditions coped with their condition while being in confinement. People with ME/CFS reached out for support at lower rates than people with conditions like cancer, kidney failure, heart diseases, and chronic obstructive bronchitis.

The study was published in the journal Health and Social Care in the Community this April.
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https://www.verywellhealth.com/chronic-fatigue-syndrome-social-support-5179923
 
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No wonder. The other long-term health conditions that were surveyed are recognized by the French social security system as such -- they are on an official list of "affections longue durée" --, unlike ME/CFS, which is still taught as a functional somatic disorder in medical schools. This makes it almost impossible for French patients with ME/CFS to be granted disability aids, which include financial and social support.

In 2019 there was a short article in the newspaper Le Figaro about how people with a diagnosis of CFS shy away from going to the hospital for emergencies because of medical disbelief. Nothing has changed since.
 
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rvallee said:
It "helps" that most of us have lost all social support thanks to medically-enforced ostracization and discrimination.
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Yes. This is one of the biggest "secondary benefits" as a consequence of ME. To be shunned and abandoned by family, friends, the health care system, and governments.

Why would we reach out to those who time after time have dismissed and mistreated us?

Under the section "People with ME/CFS May Experience Trust Issues", 5th paragraph: "where there is no underlying condition to chronic fatigue", is at least somewhat inaccurate if not more so. In 2015 the National Academy of Medicine described signs and symptoms sufficient to indicate there are underlying problems. For example orthoststic intolerance. Perhaps these don't a whole condition make, but they are serious and they do affect vast numbers of pwME.
 
what exactly did they expect when politics and the financial industry have persistently done their utmost to promulgate disinformation for decades in order to reduce costs. the patients get used to having to fight for the very basics and have not got the resources strength to demand fairer treatment .
 
Doctors' inability to say "We don't know", governments stupid cost-cutting in the NHS, and shunting of patients to psychologists and psychiatrists, plus the vacuole, the emptiness of support for lucid research.

Disgusting treatment of the truly sick, a measure of how civilized a culture is. NOT.
 
Yes, gaslighting and quite a bit of abandonment have been my experience too. But I've also had a lack of energy and initiative. The hurdle that is the communication gap has seemed greater too with mostly just zoom, email or phone to cross it. More deeply, there is a bridge between very different worlds that is needed, but both sides must be willing to venture it.
 
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