• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

A new low in research? "Writing about CFS symptoms causes harm"

Valentijn

Senior Member
Messages
15,786
While I don't understand why ME was centered out, I agree with this premise, in fact I think that it is pretty basic. While I am not sure about when I was at my sickest, now I do better at work than at home and I do better when my mind is occupied elsewhere than when I have nothing better to do than concentrate on my symptoms.
Deliberately paying attention to symptoms seems to help me avoid exacerbating them.

For example, I had worse pain problems in the first year that I was sick, and I tended to ignore it while focusing on whatever I was doing. When doing mindfulness meditation (which very deliberately focuses on sensations), I realized that 1) my muscles were hurting and 2) that pain was causing me tense them, which would cause more pain. When I realized what was happening, I could relax the muscles, thus reducing the pain. Hence my symptoms improve noticeably as a result of focusing on them, and get worse if I'm not paying attention to them.

PEM and OI work very much the same way. The more self-aware I am, the better I can take steps to minimize the impact of them.

I certainly don't fixate on my symptoms, but I do listen to them. Disregarding and denying symptoms is, I think, mentally unhealthy in any case, and especially likely to result in increased disability in ME/CFS patients.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
Disregarding and denying symptoms is, I think, mentally unhealthy in any case, and especially likely to result in increased disability in ME/CFS patients.

An exception is, perhaps, chronic pain that doesn't seem to relate to anything the sufferer is doing, and which nothing seems to help with. Then distraction is crucial.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
An exception is, perhaps, chronic pain that doesn't seem to relate to anything the sufferer is doing, and which nothing seems to help with. Then distraction is crucial.
I agree that focusing on pain can intensify the subjective experience of the pain. But mindfulness meditation can improve (decrease) the subjective experience of pain. Mindfulness meditation increases a person's awareness, generally, but it is an expansive awareness and so the meditator does not focus specifically on the pain. It's the expansive awareness that enables the pain experience to decrease. I just thought I'd mention it because I've experienced this myself in meditation. (But I'm not suggesting that meditation would resolve chronic pain.)
 
Last edited:

xchocoholic

Senior Member
Messages
2,947
Location
Florida
In the last 8 years I've learned a lot about how my body works by paying close attention to my symptoms. It's saved me a lot of grief because I found triggers that I can simply avoid. And learned that my OI was behind most of the unwell feelings I'm still getting.

For pain, I'm stuck using pain meds when it's severe and I can't lay down on ice packs. I went through natural child birth with my last child so I know how breathing techniques work but imho chronic pain can't be dealt with the same way.

I thought it was ironic that psych researchers would consider expressing ones feelings a bad thing. That's pretty much the crux of psychotherapy. lol.

tc ... x
 

Esther12

Senior Member
Messages
13,774
I agree that focusing on pain can intensify the subjective experience of the pain. But mindfulness meditation can improve (decrease) the subjective experience of pain. Mindfulness meditation increases a person's awareness, generally, but it is an expansive awareness and so the meditator does not focus specifically on the pain. It's the expansive awareness that enables the pain experience to decrease. I just thought I'd mention it because I've experienced this myself in meditation.

Yeah - and also, a lot of people find that letting go of their attempts to avoid feeling pain can improve their ability to manage symptoms.

I expect that there's a lot of variety in these sorts of things, and also, a lot of room for miscommunication in how these terms are used.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
An exception is, perhaps, chronic pain that doesn't seem to relate to anything the sufferer is doing, and which nothing seems to help with. Then distraction is crucial.
I agree that focusing on pain can intensify the subjective experience of the pain. But mindfulness meditation can improve (decrease) the subjective experience of pain. Mindfulness meditation increases a person's awareness, generally, but it is an expansive awareness and so the meditator does not focus specifically on the pain. It's the expansive awareness that enables the pain experience to decrease. I just thought I'd mention it because I've experienced this myself in meditation.
I have to admit I'm not very good at meditating in general but I do find pain meditations immensely helpful when my pain gets really bad. Pain meditations focus on the pain itself, going into the pain - or the sensations that make up the pain - being aware of exactly how they feel, and change and move. Oddly, this can be very liberating, relaxing and simply the best means I have to reduce my pain. It helps that with pain meditations, every time your attention wanders, the pain is very good at bringing it back :).

But this whole process could not be more different from CBT where symptom focusing is seen as the bad thing, in the same way as this research paper sees focuingon symptoms as a bad thing ie focusing on symptoms just makes them worse. This CBT perspective is a hopelessly simplistic and mechanical viewpoint.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
It's perverse to suggest that a patient group is ill because they have symptoms and are aware of the symptoms. In effect, their model of illness asserts that the illness is caused by its symptoms. Every other illness has symptoms that are caused by the illness, but CFS patients are a unique and special case (or simply an easy target for perverse and abusive medical theories) whereby the illness is caused by its symptoms! Er? What? Is that supposed to be science? It's circular nonsense, an abuse of science and an abuse of patients.
 
Last edited:

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I have to admit I'm not very good at meditating in general but I do find pain meditations immensely helpful when my pain gets really bad. Pain meditations focus on the pain itself, going into the pain - or the sensations that make up the pain - being aware of exactly how they feel, and change and move.
Yes, that's how I start my meditations. I find the sensations get more intense to begin with as you begin to focus on specific areas of pain. But you allow yourself to fully experience all sensations without fear or mentally recoiling from negative sensations. i.e. you experience everything with acceptance. And then, as your focus widens to include all other aspects of awareness, the pain becomes a less prominent feature of your awareness and it diminishes.

But this whole process could not be more different from CBT where symptom focusing is seen as the bad thing, in the same way as this research paper sees focusing on symptoms as a bad thing ie focusing on symptoms just makes them worse. This CBT perspective is a hopelessly simplistic and mechanical viewpoint.
I agree.

And it's also the opposite of the lightning process, which is a process of denial and self-imposing a positive mind-set upon one self.
 
Last edited:

Izola

Senior Member
Messages
495
I'm going to write the title of this psychobabble fan-fiction and its authors' names on a piece of toilet paper, flush it, and then contemplate how this exercise made me feel. :rofl:

(P.S. I just noticed there's a smiley that resembles the "dark lord" himself: :nerd:. - Ahhhhh!!!)

Ren; You have me rolling, laughing. coughing and choking in glee. Iz
 

Attachments

  • clear[1].png
    clear[1].png
    137 bytes · Views: 13
  • clear[1].png
    clear[1].png
    137 bytes · Views: 13
  • clear[1].png
    clear[1].png
    137 bytes · Views: 7

Ambrosia_angel

Senior Member
Messages
544
Location
England
They probably all went to the doctor with fatigue the next week lol. I can feel another research paper coming on.

To be honest we just have to take it in our stride and laugh at these people. No point of getting angry.
 

Iquitos

Senior Member
Messages
513
Location
Colorado
Unless you're one of the patients, or the family of one, where these people sign papers that take the child away from the parents or have a patient forcibly commited to a mental institution, or aid an insurance company in evading paying disability.

Psychobabblers' power to destroy lives greatly exceeds their grasp on reality.
 

Izola

Senior Member
Messages
495
They probably all went to the doctor with fatigue the next week lol. I can feel another research paper coming on.

To be honest we just have to take it in our stride and laugh at these people. No point of getting angry.



I think we need to do something to skeer the sheet out of them. Iz