• Phoenix Rising needs funds to operate: please consider donating to support PR

Trip to the charite in Berlin, part 6

Dr Hanitsch explained to me that he had had to give evidence in court, and there had been an issue about the different ability / fatigue scales used by the two sides, so now the Charite asks patients to fill in a range of questionnaires. I considered this to be a much better answer than “Oh, we all think Ms. Chalder is super here”.

The conversation moved on, so we didn’t discuss the details of the case, but if I had to guess I would say he was probably in court to give evidence in support of a patient’s disability pension claim, in which case he can keep my cape.

The situation in Germany, as in many places, is horrendous if you need financial support as a PWME. Even if you get a diagnosis, CFS is officially a mental illness here, your application will be dismissed at the first and second instance, and you may be forced to attend rehabilitation for depression with exercise programs and to accept a diagnosis of depression just to end the hell and be awarded half a pension. I know people from my self-help group who have been through all this and worse.

This week at my self-help group a woman came whose adult daughter is bed-ridden with severe ME. The daughter is now back home in the care of her elderly parents, following a stay at a clinic. On top of her ME, she is now severely traumatised. The clinic staff, amongst other indignities, refused to wash her, not wanting to re-inforce her learned helplessness I suppose. Or maybe they were just sadists. The daughter is slowly recovering the ability to speak, and to scream, which she does at regular intervals, just to “get it all out”. We had 3 psychs (don’t panic - good guys) at the meeting who agreed it was probably a good thing, and a perfectly normal reaction considering what she had been through. The mother asked if we had any advice to help her and her husband cope, sitting downstairs feeling helpless listening to their daughter’s screams.

These are the things that PWME regularly meet and discuss, whilst at the same time Trudie Chalder is meeting her colleagues to coin new phrases (“Persistent Physical Symptoms” is the new “Medically Unexplained Symptoms”) and acronyms (“PRINCE”) so that they continue building their careers on making our lives hell:

Persistent Physical Symptoms Reduction INtervention: a System Change & Evaluation (PRINCE Primary)

This is why I am biting my lip, expressing surprise and repressing tourette’s outbursts during this Dr’s appointment, whilst at the same time not wanting to come across as a difficult patient, or, heaven forfend, “vexatious”. I resolve to continue keeping a lid on it, after all, it’s not Dr Kanitsch’s fault. He is providing precisely the service any ill patient has a right to expect – to be treated with professionalism, courtesy and respect, to see a doctor who is familiar with their illness, to be taken seriously and believed, and to have their illness thoroughly investigated. As a PWME I have to feel as if I have won the lottery, even though I had to wait 9 months for this appointment (2.5 years since onset) and know that it is going to end with me being offered no treatment or cure.

I lay down while a nurse took what I think was 8 vials of blood (I never look down), during which Dr Hanitsch asked me if I would be willing to sign some forms.

The first one was to give my permission for my blood to be used in an immunological and virological examination of CFS patients. Then one to give my permission for the genetic analysis of my blood, that I wish to be informed if they find anything non-CFS related in the analysis, to extend the period for which they can keep the results for longer than 10 years, and to give my permission that my anonymised results can be used in published scientific papers. Such permission can be revoked at any time without reason.

All the above is in addition to the routine examination of my blood as a patient.

I said I would be happy to sign these forms. I was still lying down and noticing that the nurse had carried out the best blood draw I have ever had (didn’t notice a thing) while the Dr was explaining about my anonymised data being used for scientific papers. Momentarily forgetting my resolve to keep a lid on it, I asked what would happen if somebody who wanted to review such a paper asked for my anonymised data?

Dr Hanitsch replied that of course in that case my data would have to be given, how else could the results be tested and replicated by other scientists? That was the way science worked. I agreed that that was just how things should be.

Forgetting my lid-keeping resolve still further, I added “the reason I ask is because of the PACE trial?”

Comments

Blog entry information

Author
TiredSam
Views
189
Comments
3
Last update

More entries in User Blogs

More entries from TiredSam