Sure hope things improve some for you woollypigs, as for us all
To add my two penneth .. another long post, for which my apologies in advance, and hope that my experience is helpful for yourself and others.
Regarding Dr. Hiroko Akagi, the full text of "Cognitive behavioral therapy for chronic fatigue syndrome in a general hospital—feasible and effective" does seem to affirm that she's 100% in the psychological camp. She was the first listed author. The study mentions Fukuda, but selects patients based only upon Oxford CFS. Out of 22 sources, they reference 8 papers by Wessely, 7 by Chalder, and 6 by Sharpe, as well as quite a few other psychosomatic BPS authors. They specifically thank Michael Sharpe at the end.
Based on my anecdotal experience with Dr Akagi at Leeds & West Yorkshire CFS/ME Service, I agree.
A report back to my GP at the time includes references such as "
flushed with eyes wide open and little change in in his facial expression, although his mood appeared reactive.", "
a history compatible with CFS/ME, but also appears to have developed some functional neurological problems ..", "
symptoms indicative of a very high level of somatic arousal", and "
somatic tension".
On meeting Dr Akagi for the first time, she introduced herself briefly, indicated that she had read my notes from a couple of previous visits to the clinic to see their OT (no longer in post at this time), but wanted to me to go over my medical history again; this, after a 1-1/2 hr journey to get to the clinic. To say I was "running on fumes" is an understatement, I was literally in a state of shock from both my efforts to get to the clinic, and her apparent lack of understanding regards the further effort required to recap my medical history to date.
All this wasted effort, to be recommended a low dose of Citalopram to be increased incrementally to reduce my "
physical tension", or "
Pregabalin at a lower dose to be increase incrementally ..", and to look at "..
other non pharmalogical activities such as meditation and relaxation .." Her final recommendation was to advise "
a local referral for physiotherapy to address posture and gradual mobilisation .." with a view to "
a slow graded introduction of activity that would help strength his lower limb muscles while correcting his posture."
If she'd really read my previous notes in detail, she would have known I have been practicing meditation for the previous 10+ years. The latter recommendation based on observation of my unsteady gait, rather than a physical examination, which would have shown that muscle strength is not the cause of my problems. Rather, muscle fatagability, intermittent loss of power, hyperreflexia and other CNS issues are the problem.
Has anyone else noted how different NHS specialists use the term "..
compatible with CFS/ME", and all that implies?
I have totally stopped bothering with the NHS or my GP - they are completely useless as far as I can tell, and all it does is use up my energy.
To be fair to my GP, he at least admits that he cannot be of much help until research paves the way to better treatment for our condition, which he now accepts is primarily a biological disease. He also accepts that I am more informed about this disease than he is, and he does not make decisions about my care and treatment without my prior knowledge and input.
The main reason I continue to see my GP on a 3-monthly or 6-monthly basis, is so that I can arrange and track blood test results, which I do find helpful. I can also keep him informed of the latest development in ME research and potential treatments. About which, thank you to everyone here on PR; sure glad I found this forum.
Perhaps like yourself, I have had far too many bad experiences with too many doctors/specialists in the NHS, completely ignorant of our disease.
This is what the consultant immunologist there has to say:
"My main aims with my practice are to help individuals understand how changes in the normal balance between the immune system, the ‘stress’ system and the brain can result in chronic fatigue states and how the appropriate advice can lead to significant improvement in health."
Hard to tell exactly what this pseudoscientific talk means, but it looks like he's decided that ME/CFS equals disordered thinking. I think any random person off the street would be as likely to be able to help you as he would.
Just to add
he further says:
1. "
During this time we developed a highly effective assessment and therapy service, .." (in reference to CFS/ME Service)
Really? Not in my anecdotal experience; an initial 30-40 minute assessment by the OT (if memory serves?).
In reality, a brief discussion of current and past symptoms and lifestyle, with reference to "
character traits that can be typically found in people who develop symptoms of CFS/ME", the role of the HPA axis regards "
sympathetic and parasympathic responses", and the provision of information on pacing and grading.
A follow up letter copied to myself and my referring GP at the time, stated their (non)diagnosis as "..
symptoms appear to be characteristic of chronic fatigue syndrome"
No follow up on discharge from the service; though to be fair, he was no longer with the service at this time. I think assessment and treatment options have changed little since his time at the service mindst?
2. "
I was a member of the group commissioned by the National Institute for Health and Clinical Excellence (NICE) to develop clinical guidelines for the diagnosis and management of CFS/ME."
and
3. "
The aims of the Yorkshire Fatigue Clinic are simple: to help you get a clear answer about your illness, to understand it and to support your recovery."
As
@themjay says "buyer beware"
