Chronic fatigue syndrome successful treatment??

Danlangridge88

Hi everyone.

So I've had CFS for a few years now (only went diagnosed earlier this year) after being on the waiting list for a year, I finally had my assessment and my treatment plan is like CBT physiotherapy and doing some light stretches through an app.

I'm not finding this helpful at all. I'm on my 6th session. And I just don't find talking about it helping my physical state. I've tried gradual excercise but I get so exhausted just walking, especially up stairs. My muscles feel stiff and weak most of the time, I get horrendous backaches for no reason, joint pains. Doing any light exercise takes it out of me and makes me feel worse.

I just don't know what to do anymore. I feel like I'm never going to overcome this. Some days I literally can't even move or get up the whole day.

Has anyone else had this and what treatment worked for you? Particularly medication or even supplements or alternative therapies? And specific diets maybe?

Would love to hear some success stories on this and how you got there.

👍

Kimmy87

I've had ME for 22 years, unfortunately there is really no treatment (apart from self management) diet or supplement that is a cure.

Healthy eating is always a good idea, and I'm assuming you've been checked for vitamin deficiencies as part of the diagnostic process? Low levels of Vitamin D and Vitamin B12 can exacerbate fatigue.

Exercise is not a treatment and Graded Exercise Therapy was removed from the recently updated NICE guideline as the quality of evidence for a beneficial effect was poor, and there were many cases of actual harm to people.

I would recommend looking at The ME Association, run by Dr Charles Shepherd who has ME himself.

https://meassociation.org.uk/

Pacing and learning to live within your available energy is a useful tool for self management of ME

https://meassociation.org.uk/literature/items/pacing-activity-and-energy-management/

Rachel_Scope

Hi @Danlangridge88. I'm sorry you're not finding your treatment helpful. I can understand that talking about your condition isn't helping you physically. Have you mentioned this in your sessions?

egister

https://forum.scope.org.uk/discussion/comment/939997#Comment_939997

Exercise is not a treatment... Haha, I’ve been telling doctors this for thirty years, have they finally understood the obvious?😂

Kimmy87

Relevant points:

https://www.actionforme.org.uk/research-and-campaigns/hot-topics/2021-nice-guideline-for-me/

Many of the ME charities worked really hard on driving forwards the new guideline.