Stonebird: One man's experience of an UK CFS Clinic

[Countrygirl]

http://carersfight.blogspot.co.uk/2015/02/dont-criticize-what-you-dont-understand.html

Don't Criticize What You Don't Understand : One man's experience of the NHS Chronic Fatigue Service

A maelstrom of emotions floods my mind. Anger, disappointment, yet betrayal leaves the sharpest
tang. Hanging up, I immediately replay the conversation:

“So what should all these negative blood tests tell you?”
“That the correct tests don’t exist yet?”
“Or, that you do not have a physical problem”
“We will accept you back when you are mentally ready to begin treatment.”

M.E sufferers are familiar with this attitude. It usually manifests in the more alternative treatments our desperation has led us to. A lack of yogic control over the autonomic nervous system dismissed as being not “ready to heal”, bad karma. The bottom-line is clear – we are to blame for remaining sick.

This was different – this was the NHS Chronic Fatigue Service. For three months two nurses sat in my home scattering endless pie charts and completing countless activity logs. They reassured me they believed M.E/CFS was definitely a real illness, but until a cure was available this was the most appropriate course of action.

Of course the warning signs had been there. The Hospital is an odd juxtaposition of dilapidated psychiatric ward and painfully inadequate attempts to modernise the areas patients initially encounter. Wheelchair access was poor, the fatigue service located on the first floor at least 1 km from the car park. Waiting rooms were shared with the gender reidentification and eating disorder service.

An immunologist, claiming to have a special interest in CFS/M.E. had referred me. He was very reluctant to carry out blood tests assuring me they would all be normal. Since my visit they have dispensed with this token nod to actual medicine.

 

[alex3619]

Sigh. I am not sure this is limited to the UK, I think its everywhere, but the UK is the most obvious and the most egregious considering the dedicated clinics.

 

[worldbackwards]

I see not much has changed in ten years. To anyone who's thinking of going down this route, it's horribly dispiriting to know that they don't have your back, but there it is. You have been warned.

But as an old punk snarled “anger is an energy.” It is time to get angry, even if it is just challenging the small prejudices we all face on a day to day basis. The tide is turning – we and the psychiatrists can feel it – they are scared, their desperate tactics prove it; soon their gravy train of psycho babble will be smashed by the force of cold hard science. A change is going to come.

Now, that's my kind of language! I think we are "ready to heal"!

 

[alex3619]

Posted this reply to a comment on the blog:

Alex Young aka alex3619February 6, 2015 at 10:18 AM
Thank you for this blog. Its frustrating to realize this kind of ineptitude has been going on for decades. I have taken to using ineptitude rather than stupidity or other descriptions as I think its the most defensible label.

Its not the case we have diagnostic tests of ME, nor tests that can confirm ME. We do have tests that can demonstrate very clear and very disabling pathophysiology. Its not quite the same thing.

Let me write some dates for when these tests were first discussed in the medical literature:

1940 Tilt table test.
1946 Quantitative EEG
1949 Cardiopulmonary exercise testing.

Three of the most important tests for establishing disabling pathophysiology date to the 1940s. Its clearly ineptitude if doctors are either unaware of the tests or are denying they are useful, given the published scientific data. We fall into a trap if we claim these are diagnostic, as we give them grounds for refuting our claim.

 

[taniaaust1]

1940 Tilt table test.
1946 Quantitative EEG
1949 Cardiopulmonary exercise testing.

That's the most shocking things is these tests we should be all having have been around for so long and they still arent essential to get tests for ME/CFS people. I know the first two of these are abormal for me (Ive never had repeat exercise testing done).

Why over 60 years later, we are possibly more backwards with all this?

 

[themjay]

Believe me this is the heavily abridged version and my second visit to a secure psychiatric unit for “diagnosis”. I have a meeting with my GP on Tuesday with my power of attorney and carer where she will have to explain the denial of care that I am experiencing. So far we have only heard that she did not want to tell me to prevent “hurting my feelings”. Fear not I have all the CBT techniques to cope !!!

Will report back.

 

[Valentijn]

Believe me this is the heavily abridged version and my second visit to a secure psychiatric unit for “diagnosis”. I have a meeting with my GP on Tuesday with my power of attorney and carer where she will have to explain the denial of care that I am experiencing. So far we have only heard that she did not want to tell me to prevent “hurting my feelings”. Fear not I have all the CBT techniques to cope !!!

Good - their bullshit is impeding your ability to get any medical care, and that should be a very solid foundation for legal action if they don't remedy the situation.

 

[wastwater]

I've been to this place