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.
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How is CFS/ME treated?
There is now good evidence for management strategies, which enable people to control their fatigue and improve their activity levels by addressing how energy is used and managing other factors which impact upon fatigue. We also look at strategies to control debilitating symptoms. There is no specific single medical treatment for CFS/ME and although many different treatments have been suggested few have withstood rigorous trials. .
We believe in patients being central to the therapy process and we focus on supporting patients to apply strategies which they can use to help themselves.
The Team
We have a multidisciplinary team who provide assessment, and management, for people who have a diagnosis of CFS/ME. The team includes clinicians in liaison psychiatry, occupational therapy, physiotherapy, cognitive behaviour therapy, CFS/ME nursing and dietetics. We ask that other causes of fatigue (medical or psychiatric) are excluded before referral, but we are in the process of arranging some sessions offering medical review for patients who may need another medical opinion. There is a clinical lead and team manager and the whole team is supported by administrative staff.
I hadn't expected it to be a good service -is there anywhere that is in the UK?
Do they explain why they don't offer any medications? Some are quite helpful. Do they arrange visits with specialists for various ME/CFS issues, such as autonomic dysfunction?They don't offer any medications, but they offer a very useful service in the form of one-to-one tuition on your pacing and practical advise about things like relaxation techniques and sleep hygiene.
I wanted to say that it isn't all bad in the NHS. I've been attending the pilot clinic in Edinburgh (they only have funding for an initial 2 years).
At no point did they imply or suggest it was all in my head, far from it. They don't offer any medications, but they offer a very useful service in the form of one-to-one tuition on your pacing and practical advise about things like relaxation techniques and sleep hygiene.
They have a physiotherapist on the team, but they don't force any exercise on you - it's on offer if you ask for it. I wanted to try and build some strength in my arms so they gave me some very gently exercises and made it very clear that I should do very little and only if I felt up to it.
The aim is to improve your quality of life by better managing your symptoms and living within the energy limits that you have.
I wanted to say that it isn't all bad in the NHS. I've been attending the pilot clinic in Edinburgh (they only have funding for an initial 2 years).
At no point did they imply or suggest it was all in my head, far from it. They don't offer any medications, but they offer a very useful service in the form of one-to-one tuition on your pacing and practical advise about things like relaxation techniques and sleep hygiene.
They have a physiotherapist on the team, but they don't force any exercise on you - it's on offer if you ask for it. I wanted to try and build some strength in my arms so they gave me some very gently exercises and made it very clear that I should do very little and only if I felt up to it.
The aim is to improve your quality of life by better managing your symptoms and living within the energy limits that you have.
Do they explain why they don't offer any medications? Some are quite helpful. Do they arrange visits with specialists for various ME/CFS issues, such as autonomic dysfunction?
It's only a pilot clinic, so they are still finding their feet. If they get funding to continue they may extend their services. There is a specialist service at another hospital that would currently deal with the medication side of things and referrals to things like other specialists. It was that specialist that referred me to this new pilot clinic.
The problem is that practitioners will not openly disagree with your view of your disease, and will validate your experience of your symptoms. But they still (almost always) believe those symptoms are essentially psychosomatic or the result of deconditioning.I don't think we should bash 'fatigue' clinics too much. We are not the only chronic illness suffers that have to battle crushing exhaustion that robs us of our lives - I have friends with rheumatism and chron's who also suffer badly. Granted, those illnesses get proper drug treatment (as we should) but I'm not going to turn down coping strategies that I might not have thought of.
I'm going to take all the help I can get. After decades of illness, it's nice to not be belittled or ignored for a change.
I'm going to be optimistic and hope that we get drug therapies as well in future.