ChrisD
Senior Member
- Messages
- 475
- Location
- East Sussex
After being referred to the NHS CFS, a year later after Pain, fatigue and suffering, I went through their clinical assessment which identified that I didn't have a more serious disease and by process of elimination; I had ME/CFS.
But after so much promise from my GP and various doctors I saw in my surgery, i was hoping for a bit more than a workshop on resting and an assessment where I felt a bit patronised at times and told that my main symptom (at that time) of balance and dizziness was a perception of balance?! SO feeling frustrated, I penned an E-mail back to my CFS clinic that covered all the studies had made clear headway in the pathology of this illness and treatments that seem to help people, albeit off the beaten path of the NHS. I also feel it is important to give patient feedback so that the doctors know which protocols are working for patients, so that they can open their eyes (and minds) a bit and cause a bit of reverse momentum - maybe it will get those communities talking and change opinions that are set by guidelines and Psychiatric thought leaders.
You can see the response attached in a Jpeg, they key points that I found a bit strange were:
1. 'In this service we only deal with the CFS/ME components of our patients problems' and outlining that they couldn't advise on Lyme and co infection testing, GCMAF, Rifaximin and mitochondrial supplements. To me this is odd because these are all potential components of ME/CFS.
2. The fact that I got the doctor to acknowledge that there is such thing as GCMAF and that it exists in a medical environment.
3. Recommending that I reduce High dose Vitamin C - which some may have seen in other forum posts to have helped reduce inflammation and improve my symptoms massively. Therefore this seems a bit counter intuitive but of course doesn't fit their legal guidelines to advise on this.
4. That they mention that other symptoms and ideas about the nature of my illness should be taken up with my GP! Well I have only spent a year going to my GP almost every fortnight and being ignored, patronised or dismissed on all of these things, and being told that I should look forward to getting on the CFS specialist service! I find myself going round in circles!
GP's I have seen are under the impression the CFS service is this magical practice that orders all kinds of functional tests and can make clear diagnosis ( I went back to my GP and made it clear this wasn't the case) - She had told me that I would be able to have further Lyme testing and various other tests there.
5. ''I hope you are able to attend our REHABILITATION programme'', I find this fairly self-righteous and also it makes association to addictions and psychological illness. What do they believe they are capable of?
Does anybody else have any thoughts on this? It seems that the NHS get more and more out of touch every day, even with each other!
I will be replying to them, so would appreciate any ideas on how to reply.....
But after so much promise from my GP and various doctors I saw in my surgery, i was hoping for a bit more than a workshop on resting and an assessment where I felt a bit patronised at times and told that my main symptom (at that time) of balance and dizziness was a perception of balance?! SO feeling frustrated, I penned an E-mail back to my CFS clinic that covered all the studies had made clear headway in the pathology of this illness and treatments that seem to help people, albeit off the beaten path of the NHS. I also feel it is important to give patient feedback so that the doctors know which protocols are working for patients, so that they can open their eyes (and minds) a bit and cause a bit of reverse momentum - maybe it will get those communities talking and change opinions that are set by guidelines and Psychiatric thought leaders.
You can see the response attached in a Jpeg, they key points that I found a bit strange were:
1. 'In this service we only deal with the CFS/ME components of our patients problems' and outlining that they couldn't advise on Lyme and co infection testing, GCMAF, Rifaximin and mitochondrial supplements. To me this is odd because these are all potential components of ME/CFS.
2. The fact that I got the doctor to acknowledge that there is such thing as GCMAF and that it exists in a medical environment.
3. Recommending that I reduce High dose Vitamin C - which some may have seen in other forum posts to have helped reduce inflammation and improve my symptoms massively. Therefore this seems a bit counter intuitive but of course doesn't fit their legal guidelines to advise on this.
4. That they mention that other symptoms and ideas about the nature of my illness should be taken up with my GP! Well I have only spent a year going to my GP almost every fortnight and being ignored, patronised or dismissed on all of these things, and being told that I should look forward to getting on the CFS specialist service! I find myself going round in circles!
GP's I have seen are under the impression the CFS service is this magical practice that orders all kinds of functional tests and can make clear diagnosis ( I went back to my GP and made it clear this wasn't the case) - She had told me that I would be able to have further Lyme testing and various other tests there.
5. ''I hope you are able to attend our REHABILITATION programme'', I find this fairly self-righteous and also it makes association to addictions and psychological illness. What do they believe they are capable of?
Does anybody else have any thoughts on this? It seems that the NHS get more and more out of touch every day, even with each other!
I will be replying to them, so would appreciate any ideas on how to reply.....