Jenny TipsforME
Senior Member
- Messages
- 1,184
- Location
- Bristol
What about South West @charles shepherd? Anyone with good reviews private/NHS?
The really dispiriting thing is the NHS seemed to go backwards with the start of the "specialist" centres. I was diagnosed by an immunologist (who also specialised in HIV/AIDS) before the centres. He did additional tests and prescribed meds for dizziness and also amitriptyline to correct reverse body clock. Although none are cures, there are many meds which can help our symptoms (a whole book Reviving the Broken Marionette).
The first time I went to the Centre as a patient I had a long appointment with a 'doctor'. I didn't realise until there was follow up correspondence that she is an OT. I'd been telling her symptoms expecting medical treatment. She is a lovely person but I don't think an OT can treat a complex medical condition like ME. It didn't do me any harm but I was steadily improving anyway and that continued. Later I saw her when I was panicking about changing job to a more demanding role. At this point I actually thought myself that this was a psychological hangover and this was when I asked for CBT. She could see that wasn't right for me but didn't dissuade me from the job (to be fair this must be nigh on impossible to judge for someone else). A few months into the job I had a massive relapse worse than ever before, from a minor tonsillitis.
When I spoke to the centre after my relapse I was saying I thought it wasn't just ME and wanted to see a doctor. Their system doesn't allow for this: you are randomly allocated a physiotherapist, an OT or the specialist GP. The person I spoke to also then commented that anyway they don't do any tests or prescribe anything. At this point I decided my GP was right and there was no point going back. After a couple of years I bought a heart rate monitor and realised POTS was also in the mix. Looking back my relapse seems more predominantly POTS but I was treating it as ME and in my 'healthy eating ' diet had cut out salt. My GP didn't know about POTS.
The really dispiriting thing is the NHS seemed to go backwards with the start of the "specialist" centres. I was diagnosed by an immunologist (who also specialised in HIV/AIDS) before the centres. He did additional tests and prescribed meds for dizziness and also amitriptyline to correct reverse body clock. Although none are cures, there are many meds which can help our symptoms (a whole book Reviving the Broken Marionette).
The first time I went to the Centre as a patient I had a long appointment with a 'doctor'. I didn't realise until there was follow up correspondence that she is an OT. I'd been telling her symptoms expecting medical treatment. She is a lovely person but I don't think an OT can treat a complex medical condition like ME. It didn't do me any harm but I was steadily improving anyway and that continued. Later I saw her when I was panicking about changing job to a more demanding role. At this point I actually thought myself that this was a psychological hangover and this was when I asked for CBT. She could see that wasn't right for me but didn't dissuade me from the job (to be fair this must be nigh on impossible to judge for someone else). A few months into the job I had a massive relapse worse than ever before, from a minor tonsillitis.
When I spoke to the centre after my relapse I was saying I thought it wasn't just ME and wanted to see a doctor. Their system doesn't allow for this: you are randomly allocated a physiotherapist, an OT or the specialist GP. The person I spoke to also then commented that anyway they don't do any tests or prescribe anything. At this point I decided my GP was right and there was no point going back. After a couple of years I bought a heart rate monitor and realised POTS was also in the mix. Looking back my relapse seems more predominantly POTS but I was treating it as ME and in my 'healthy eating ' diet had cut out salt. My GP didn't know about POTS.