CBT

Oh.  Someone finally mentiioned that CBT is Cognitive Behavior Therapy. I should have figured out that one--but I didn't.  Thanks Phil for setting me straight.  Have never heard of it as a help for CFS--just for depression or anxiety.  Interesting connection.  Again, thanks for the post.

No probs - I think the thinking is also that SOME may just be stuck in a trough of depression or negative thinking, and feel they're worse than they are.

 

You say it might stop people thinking they're exhausted and that they're just tired and can do a bit.

That sounds dangerous in that it could encourage people into over-exerting themselves to please the therapist or because they feel they have to. It doesn't matter if the house is untidy or the clothes need washing. The key is not to push ourselves.

I think we're able to know when we can do things without CBT! It seems a bit patronising.

Not having a go at you Phil, if it helps you great! 

It's just not true that we feel we're worse than we are. People wouldn't dream of suggesting that to anyone with Multiple sclerosis or Cancer but it's ok to say it to us!

It's like saying it's all in our heads and it makes me so angry! It's not a psychological condition, it's physiological.

Thankyou GeorgiaS;  this is Exactly how I feel, too.  If you look at the list of symptoms for MS, everyone will note that "they are Very similar", and the only way to really diagnose MS  over Fibro, is via an MR and Lumbar Puncture (which I had to go through) I to show if there are any "nodules" in brain.  At first my specialist told me he "thought I may have MS due to my type of  pain, it's exacerbators and my symptoms".........so yes, if this is the case, and also the fact that there was an outbreak of a very Similar condition in the 1950s, and was thought to be "like Polio"; then this certainly tells me That this Condition Is Not Psychological, but more to do with a Virus.   Hence my words re not feeling that CBT is any more effective in "healing"  than other forms of therapy, such as counselling/Talk Therapy,  for our "down days".    I do wish that the money from our public health system/s could be spent on "finding a cause and real treatment that gives us some quality of life, as we are not going to die from Fibro (not that I know of anyway), but just have a Long life of the same types of pain and other issues, that those with cancer, polio, MS  etc have/get....and receive recognition for.             sorry if this sounds like a rant, but thank GeorgiaS for her input.                         Bron

Yes exactly Bronwyn! One of the hardest things of all for me is not knowing how many more years or decades I'm going to have to endure this horror if I don't get well.

Think a lot of how helpful people find it depends on how knowledgeable the therapist is on CFS/ME. A good therapist would never encourage you to push yourself beyond your bodies limits. I found CBT really helpful. I had sessions over a year and was able to do more at the end of the year but never felt pressurised to push myself. It was more about looking at my days in detail and seeing what small changes I could make, setting small achievable goals and having a more positive outlook.

Yes I agree, there are good and bad therapists in every field, and I'm glad it helped you. I'd like to do Mindfulness and therapeutic meditation CDs=14px and Yoga are helpful for some people but I don't think that CBT should be the front line of therapy by the medical profession.

It's sending out a dangerous message that the government and the medical profession think ME is a disease of the mind and not of the body. And a lot of money is being poured into research on CBT and GET and it should be spent on finding out more about the physiological implications of the disease.

I didn't write =14px in case you're wondering what I mean! It just came up when I posted it.

"It's sending out a dangerous message that the government and the medical profession think ME is a disease of the mind and not of the body."

A MEN!!!

I tend to agree with you Dee.  It took what seems like forever to get the various doctors and nurses I have worked with over the last twenty-two years to understand that this is a physical illness.  Yes, depression can be a result of so much discomfort and exhaustion, but I do not believe it is the cause.  I know that depression CAN cause much pain and exhaustion, but once you've experienced CFS, believe me--you know it is different.

Georgia and Bron, i cannot understand why people have to have an actual diagnosis of a disease for anyone to be empathetic to them. I was sick for sooo many years, docs wrote me off as a whiner. no one had an ounce of compassion for me.  Then I went to the doc with a rash and made him biospy it. he argued with me about and it and was not going to biospy it. When I held his feet to the fire to test, it came out that I have a severe and painful and progressive muscle/connective tissue disease.  Whch may have also been prevented if I had also known I had celiacs. Malnutrition for CD could be the cause, but how would we ever know if docs don't test (bad words 👿😡

If one is in pain, we need to beleive them and treat them with the same kind of kindness and respect that we give someone who has cancer. Pain is pain. We need to not judge others; we don't know what they are feeling.  

It is the jugmental folks that make being sick so hard. They say things like "well, if you didn't sit around so much . . ."  or "your muscle can't get stronger if you don't use them"  I want to call them names and pucnh their teeth out sooo much!

I wonder how many folks out here have been actually tested for the diseases that are rare, like mine. i believe they are only rare because they don't test unless they are held to the fire. 

hugz to all who are in pain, whether it be physical or psycological because pain is pain.  Don't judge it!!

 

Well said, Dee!  Well said!

I do guided meditation CDs and find them really helpful. They are as restful as having a sleep and you feel really calm after doing one. Yoga really helps too when I have the energy to do it. ME is a real physical illness and CBT does not cure it but can help a bit. What I don't understand is how some (though not many!) people manage to make a full recovery. Don't know if their bodies have something different in them that helps them fight it off better. You'd think they could investigate this more to try and find out what makes some better but not others.

Thankyou Dee; Very well put, and could only wish that "these medicial professionals" would/could read your's and the others' comments.    Bron

You know, I never had a mean bone in my body, but after years of neglect from ALL the doctors, I am angry. There are no consequences for their action.  it really rattles me and I can see why some people go off who have mental illness, they are sooo mistreated. so effing mistreated and there needs to be accountability.  😤

i hope when I die I can rattle a few cages

Yep. I'll add my voice here. I, too, have never been an angry person. Now I'm angry at doctors and also, sadly, angry at friends who've essentially abandoned me. In addition to dealing with this terrible illness, so many of us are also dealing with these other issues. I practice meditation and mindfulness to help me cope. And it does help. But some days it's just too much.

i hear ya. i wish we could all unite somehow and get a message to doctors,police, etc. that we demand better treatment.  Laws would have to be changed. I am too old and sick and I know nothing about writing petitions or how to put them on the computer for folks to sign.  

I hope someone out there does! 

Yes Elaine, I know a couple of people who recovered with diet but I've been working on my diet for as long as I've had ME, 10 years and I still have it. It's a mystery all right!

I've been making improvements though.

Good idea about a petition Dee but we're all in different countries so I'm not sure how that'd work. I think in the government petition sites you have to be from that country, not sure.

I'm just putting the word out there for the folks that know.  One size does not fit all for sure  

Well I'm just wondering: seeing as how I wrote my piece earlier this am, and am now reading your replies, are any of you from Australia?  I know some arn't/maybe in America, but if from Europe, you wouldn't normally be replying back till tomorrow????

If from Australia, then we are in same country, and we don't really need to sign "one petition"l but all send requests/complaints to our Federal Members to be presented to the Federal Health Minister.................Bron

Bron, Awesome for you guys!

Sadly, I've never heard of anything like that here in the US 

Should've know it'd be moderated. I gave the link to the gov uk petition site.

Like my neighbor says, "My bad". haha!! I have been moderated and had things removed and never found out why.

I suppose since this is a world wide site, many countries have stricter freedom of speech laws, they have to be careful? I have no idea.  It is theri site and they can make the rules. It's too bad but I don't make the rules.

I really hope you feel better soon.

Hummm my thoughts on the moderating aren't so kind but I won't rant in case I'm moderated! 

I'll explain later.