M.E /cfs treatment

teighan

Hi,I was diognosed with me,cfs 6 years ago and havnt had any treatment, what treatment is available to me?my docter suggested cbt therapy ?.  I also have fibromyaliga which I get treatment for.thanks for reading xxx

markyboy

Hi i have ME even though i developed it 6 years ago it was only diagnosed last year if you go on the ME charity website there are loads of help there and advise 

Sam_Alumni

Hi @teighan
There is loads of information on the ME association website that might help?

Pippa_Alumni

Hi @teighan, lovely to meet you! I have ME/CFS too. Unfortunately it's very difficult to 'treat' as there are no targeted treatment currently available for the condition. However, there's lots of guidance on condition management on this page which may come in helpful, and it may also be worth speaking to your GP about a referral to a specialist ME/CFS service. Hope this helps, and good luck! 

peachy1966

There no cure yet and treatment hit miss . My son had 2 1/2 years bedridden. Light box help keep body clock but there only time and trying do small things which you can and don’t feel guilty . We never put guilt on my son and it helps .he never got down he says he we’ll get better so positive mind help but I know not easy. There is a lot of people looking into illness now so you never know . A good doctor helps . Ask help and get good team around you it really dose help .

fizzied

I think the available treatment depends on the region. In my area there is a specific ME/CFS service with a combination of physiotherapist and psychologist. They provide pacing advice (group and individual sessions), and counselling to discuss managing the condition in daily life as well as the mental health challenges. 

I have also found mindfulness, provided through my local talking therapies service, useful. It wasn't specific for ME/CFS but I found it useful.

Can you ask your doctor whether there is any ME/CFS specific services in your region?

Florine

With regard to CBT (cognitive behavioural therapy), please note that as per the 2021 NICE guidelines (https://www.nice.org.uk/guidance/ng206) this should no longer be offered as a "treatment" for ME, although it may still be offered as management support.

Phenex

Hello. If you don't mind me asking, how did everyone here eventually find success with their health practicioners taking their concerns seriously enough to test for CFS, M/E, Fibro etc? I suspect something similar is at play with me, only I seem to be experiencing great difficulty with the health system here when it comes to finding the right doctor who's capable enough to figure out what's causing my problems.

MKH

I am struggling. I feel hopeless and helpless. The ME society try their best but there’s a long waiting list to get a counsellor. I am using one of their physios . Tbh nothing really she can do . It’s about pacing , but pacing is very difficult. It’s all try and error . Most of it is error. My son can’t even stabilise his base line . He is only functioning 20% of his normal. What hurts the most is there is no one to talk to or get mentoring from . I’d love to befriend someone who understands the condition and I’d like to be able to support them and then me . A parent Or carer. It’s hard to use this forum . Wish there was a WhatsApp group . I literally feel hopeless . How is it possible to live like this without having a breakdown?

BundledMystery

I have CFS/ME and found that CBT didn't help at all and you just have to find what works for you really

sootycat

I have recently been diagnosed with me/cfs with fibromyalgia all been brought on after having Covid,I have found it to be hard going and so far I haven’t found anything that works for me. I have been referred to the me/cfs services so I am not very hopeful.

kitsmum

I was diagnosed with ME/CFS a couple of years ago. I had blood tests for various things but they came to the conclusion it was ME/CFS quickly due to all the respiratory illnesses I'd had in the previous year. I asked for a referral to the ME/CFS clinic and this was done. They agreed with the diagnosis. They only thing that works for it is pacing and I am not doing very well with that. I have just subscribed to the visible health app and also to the wearable which monitors symptoms and heart rate and gives you a suggested number of energy you have to use. I am struggling to keep inside the number and overexert very quickly and so realised just how much I have been overdoing it. I was diagnosed with diabetes last year and fibromyalgia this year which also reduces my energy levels. I have other illnesses as well including anxiety and depression which the CBT was useful for.

Has anyone else found anything that helps with pacing?

chiarieds

Hi @kitsmum - I think some things have been learnt from those who unfortunately suffer from long Covid, as was mentioned above, as there are similarities between long covid & ME (& also fibromyalgia).

Pacing is quite difficult to do (I know because of the disorder I suffer from, & about others). It's not just about your physical activity either, it can also be about your cognitive function, as this can also take a toll in your everyday activities.

Try & find a baseline for your own particular level of functioning fairly well; if anything aim for something a little lower than this to see how you do. Only then should you build up a little to ensure you're not over exerting. I think your app sounds interesting, but it's just monitoring some of the physical things it can do such as your heart rate, etc. it's not telling you about specifically you. You should only use the energy you have available to use. Please see:

https://meassociation.org.uk/wp-content/uploads/2024/09/NICE-GUIDELINE-SUMMARY-BOOKLET-2021.pdf

The ME Association has a wealth of really good info, so, if you haven't, please have a look at their website:

https://meassociation.org.uk/

Other than pacing, what may also help is maintaining a good diet, as this does for most disorders, & trying to develop a good sleep regime.

luvpink

https://forum.scope.org.uk/discussion/comment/879069#Comment_879069

Same here.

CBT was not helpful for me.