Category Archives: My NHS Journey

My NHS experience with CFS – Part 3 (NHS CFS Foundation Course 2- Recap & Rest)

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So I have to admit I wasn’t quite as enthusiastic and with it at the second part of the NHS CFS Foundation course, as I had way over done it earlier in the week, we have all been there at some point.

Like parts 1 & 2 of my NHS experience with CFS, guiding from my experience with my GP and assessment (Link) and the first foundation seminar (Link), this post I will talk through what I got out of the second and final foundation seminar, through both what leader taught us and from comments from other service users, as well as providing you with the handouts that I received on the day. Continue reading →

Simplifying Cognitive Behavioural Therapy (CBT) for CFS/ME

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I have had a lot of involvement in CFS/ME Facebook groups and forums, and there is a lot of differing views of what CBT is for CFS. This I think is due to a one size fits all approach of CBT being used by a lot of medical professions, so for instance using the same methods of CBT to help depression and CFS just isn’t the best way forward.  It really seems like what your told differs vastly on your postcode, and how much experience your doctor/ OT has with CFS or if their experience is in mental health.
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My NHS experience with CFS – Part 2 (NHS CFS Foundation Course 1)

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My NHS experience with CFS – Part 2 (NHS CFS Foundation Course 1)

As I mentioned in a previous posts (link)I was diagnosed with CFS and was seen by specialist clinic within about 9 months of symptoms first appearing. Which is really fast compared to other peoples experiences, I attribute this to an amazing GP.

So I really wanted to document my experience with the specialist NHS clinic, because before I got seen I had no idea what to expect, and I know so many people struggle to get any treatment for CFS.

I had heard very mixed reviews from different people, which I think might be due to what different people expect to get from the clinic – there is no miracle cure to CFS/ME so don’t expect that.

I went in with an open mind and was very glad. In this post I will talk through what I got out of the first foundation seminar, through both what leader taught us and from comments from other service users, as well as providing you with the handouts that I received on the day.
Continue reading →

My NHS experience with CFS – Part 1 (GP and referral to specialist clinic)

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My NHS experience with CFS – Part 1 (GP and referral to specialist clinic)

I know that a lot of people have had very bad experiences with doctors and the NHS, however this really hasn’t been the case for me.

First step for me was having a fab GP, she was supportive from the outset and explained that she thought I had CFS, but had to do a load of tests to rule everything else out.

It took from Nov13- Jan14 to get through that processes, as I needed to have a couple for re-tests done, after all came back within range ‘normal’, my GP gave me the CFS diagnosis and referred me to one of the 14 specialist centres in the UK for the development of services for people diagnosed with Chronic Fatigue Syndrome/ME. Continue reading →

Getting Diagnosed CFS

Posted in CFS Tips, My NHS Journey by

In the beginning
In the fall of 2013 I started to experience a variety of symptoms that included extreme fatigue (worsening 24/48 hours of activity), headaches, muscle ache & weakness as well intermittent dizziness.

It really stopped me in my tracks. I went from being able to juggle work, studying for my ICAEW exams, Chairing a local charity as well as having a very active social life; to being house bound (sometimes even bed bound), I felt like everything I had worked so hard to build was slowly slipping through my fingers.

My work &  GP were great really supportive, I initially got signed off for a few weeks whilst we tried to figure out what was wrong, work straight away put me on a phased return (3 days a week & reduced hours) as well as getting an external vocational rehabilitation adviser involved.

This however was still too much I was calling in sick on a regular basis, getting frustrated at myself for not getting better or understanding what was going on. The GP ordered endless blood tests, all of which continually came back negative.

Getting Diagnosed
As things worsened my GP explained to me that she thought that I had CFS/ ME, but I needed to have yet more blood tests done as a process of elimination before she could make the diagnosis and refer me onto a specialised clinic.

Once these came back negative at the end of Jan 14, she made her diagnosis and I made the decision to get signed of work at the recommendation of my GP (something that I resisted up to this point). She wanted to sign me off initially for 3 months, but I was very taken back by this so compromised at 1 month, as at that point I was not psychologically ready take so much time off (I later got signed off for a further 2 months, taking my time off to around 3 1/2 months).

I was referred to the South West ME/CFS Clinic held in Frenchay Hospital, I got my referral through in March, but had to wait until June 14 to get my first appointment.

Having a supportive and understanding GP is essential, if you don’t my advise to you is keep switching until you find one that understands what you are going through.

I found the NHS website pretty useful in letting me know a bit more about the condition and what I should expect.