Investigating associations between fatigue & anxiety in ME/CFS.

BenWesty

New Member
Hi,

My name is Ben. I lived with ME/CFS for 9 years. I have now recovered, although it has left a legacy of anxiety... . Nonetheless, I am well enough to return to my local university in Worcester in the UK, where I am studying psychology. I am taking the opportunity to learn more about ME/CFS and anxiety and so have chosen to investigate the associations between fatigue, anxiety as well as perfectionism, in ME/CFS, for my final year research project.

If anyone would be interested in participating in this (it involves completing 3 short questionnaires), it would be really appreciated. The link to the study, where there is lots more information about it, is https://ucw.onlinesurveys.ac.uk/8svdjgru5x-11.

Many Thanks

Ben
 
ME is not in any way a psychogenic disease, so far as I am aware from reading and talking to my consultant, depression and anxiety are no more likely to hit people with ME than those without it. If there is any link between anxiety and ME I would tentatively anticipate it is linked to 1. the person not having come to terms with the disease and the high degree of disability it brings, this is a huge adjustment, and very difficult, a grief process like any other loss. 2. the person knowing that PEM is harmful and strongly associated with deterioration, but not being able to pace effectively to prevent it - perhaps because of circumstances (single parent with small children, etc or impending homelessness if they stop work). or 3. because they are being medically gaslit by doctors, relatives and others who regard the disease as psychogenic and keep telling them they should push through, increase exercise or whatever. This, from what I've both experienced and seen in others over the years, can leave people badly traumatised, and family relationships shattered beyond repair, leaving people really damaged emotionally. Some I've met with ME report emotional ups and downs, but others are simply too exhausted to process anything. And people with ME are as likely to suffer MH problems and other physical health problems as anyone else. I think if people are very anxious - PTS etc - around seeing doctors after years of being gaslit, then the two things that can help is using a good tech aid (I use visible app, others find different methods including timers and health apps) to pace accurately to ensure you remain below PEM threshold. The other thing is a limitation of consent note on your medical notes to make absolutely sure the health care providers know that you do not consent to be seen by anyone who approaches the disease as psychogenic. I don't know if that helps.
 

BenWesty

New Member
ME is not in any way a psychogenic disease, so far as I am aware from reading and talking to my consultant, depression and anxiety are no more likely to hit people with ME than those without it. If there is any link between anxiety and ME I would tentatively anticipate it is linked to 1. the person not having come to terms with the disease and the high degree of disability it brings, this is a huge adjustment, and very difficult, a grief process like any other loss. 2. the person knowing that PEM is harmful and strongly associated with deterioration, but not being able to pace effectively to prevent it - perhaps because of circumstances (single parent with small children, etc or impending homelessness if they stop work). or 3. because they are being medically gaslit by doctors, relatives and others who regard the disease as psychogenic and keep telling them they should push through, increase exercise or whatever. This, from what I've both experienced and seen in others over the years, can leave people badly traumatised, and family relationships shattered beyond repair, leaving people really damaged emotionally. Some I've met with ME report emotional ups and downs, but others are simply too exhausted to process anything. And people with ME are as likely to suffer MH problems and other physical health problems as anyone else. I think if people are very anxious - PTS etc - around seeing doctors after years of being gaslit, then the two things that can help is using a good tech aid (I use visible app, others find different methods including timers and health apps) to pace accurately to ensure you remain below PEM threshold. The other thing is a limitation of consent note on your medical notes to make absolutely sure the health care providers know that you do not consent to be seen by anyone who approaches the disease as psychogenic. I don't know if that helps.
Thank you very much for taking the time to post this feedback, it is so interesting and useful to hear individual perspectives and experiences.
 

Creekside

Active Member
Keep in mind that ME's symptom is not fatigue, but rather a fatigue-like state. "Fatigue" is a poorly defined term, lacking in a reliable way to measure it. This results in comparisons that misapply results from one study with those of another, which in turn may result in treatments that are counterproductive.

I doubt that ME has a stronger correlation with anxiety than any other non-ME disease.
 

Laura S

Member
Hi,

My name is Ben. I lived with ME/CFS for 9 years. I have now recovered, although it has left a legacy of anxiety... . Nonetheless, I am well enough to return to my local university in Worcester in the UK, where I am studying psychology. I am taking the opportunity to learn more about ME/CFS and anxiety and so have chosen to investigate the associations between fatigue, anxiety as well as perfectionism, in ME/CFS, for my final year research project.

If anyone would be interested in participating in this (it involves completing 3 short questionnaires), it would be really appreciated. The link to the study, where there is lots more information about it, is https://ucw.onlinesurveys.ac.uk/8svdjgru5x-11.

Many Thanks

Ben
Hi Ben, tried to do your survey. it is telling me that the date i put in for illness onset is not in the correct format, but it is. so it won't let me submit.
 

BenWesty

New Member
Hi Laura,

Thanks for your message and many thanks for trying to participate. I'm not sure what the problem is with that as it usually seems to work. I'm really not sure what is causing that to be honest as you should just be able to select the date from the calendar. Ignore the time though as this is there in error.

I'll have a look into it and let you know if I work out a proble, but as far as I can see, it should all be working ok.

Many Thanks

Ben
 

Just Me

New Member
Hi Ben, I definitely have struggled with anxiety since my ME began. I have done several things to try and function better including neuro stimulation, meditation and mindfulness, taking magnesium and B vitamins., changing my diet. I am always looking for some kind of answer and want a plan or course of action because of how uncomfortable I feel. I think it has brought out ADD symptoms that I never knew I had but now that I cannot be my old "energizer bunny" there is nowhere for that energy to go. Thanks for doing the research.
 

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