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brian nicholson detained in psyschiatric unit with me cfs for 3 years

bohemian

Senior Member
Messages
133
Dear followers

Thank you for your help. I am still being given clozopene and i await a medicine review. I thank you for help msybe wruting to the police constables may help as would get a private psychistrist to speak to. I know from experience the police may say im harassing them. I need to read more about m.e pots cfs lyme mycoplasma hhv6a and challenge with a medical negligence lawyer. Anyone found sny luck with lawyers or even countess of mar. Who is most influencial in parliament. Thanks for your help.
 

bohemian

Senior Member
Messages
133
I thank everyone for help. I am on a cto and being given clozapene mainly because of poor review by doctors neurologists with poor experience of brain problems in m.e or cns effects. They wanted to put me in a residential care home but i am refusing. I neef a full review if meds from a very good doctor. Any been with dr chaudhuri. The pots ohysician gas given me florunef but i am refusing to try again it makes me urinate more st night and pain at back of head. I am on high dose of sodium tablets. My cirtisol is low. Does anyone know of the poesnecker clinic. Sny one had experience of prof g nicholson. Still in tne clitches of psychistry. Kind regards brian
 

bohemian

Senior Member
Messages
133
Just to let the community to know is ive lost reflexes in legs and arms. It affects you breathing. Anyone have this problem.
 

bohemian

Senior Member
Messages
133
Hi in in shared accom. I had money saved to go away for good. I got no house benefit so all money gone. Very unhappy on these psyciatric drugs its out of order. Im sorry to say that a member of house of lords said sge doesjt want to speak anymore as its gone to far.

I wont say anything here but there is covert harassment going on and gov are involved
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi i am still on cto. A mental health lawyer cant get you off clozipene. Who can ? Its caused alot of damages. I will write my summary to me association. I have no hope but i wont give up with them abusing people with drugs for no reason

A lawyer couldnt do anything unless you had other drs supporting that you have been misdiagnosed and hence being given the wrong drugs. You need to find a couple of drs with the same kind of qualifications as the ones who have imposed all this onto you who would be prepared to back you up in court.

Lawyers cant do anything like rediagnose you which is what you are needing to be able to say in court that your medical care is inappropriate
 

bohemian

Senior Member
Messages
133
Dear group

I am back
I have been on a cto and todsy after telling the dr i have been vomiting for 6 yrs every day and brain problems it has been extended for anothrr 12 months of clozapine unless i refuse meds and go into hospital again. I have put on 40kg snd in great pain. Hodpital admission could be on the cards. The mps wont reslly help.
 

Invisible Woman

Senior Member
Messages
1,267
Hi @bohemian. It's good to hear from you though I am sorry that you are still being put through the mill.

Typical with this disease - I have just watched a very uplifting video by Ron Davis about his work. It all so sounds so promising and then in the next thread here you are, still being treated so badly.

I hope that there will be some answers for us all soon and especially for guys like you who have been through the worst that the system can throw at them.

I wish there was some way we could support you while we wait for some answers.
 

bohemian

Senior Member
Messages
133
Hi all. Hi i have been given clozapene for a while. It has caused a worsenong in m.e cfs relapse. Due to being desperate i told the dr i cant cope with the exhsustion. They hsve put me in acute crisis unit given more clozapene and threats of sectioning if i leave the unit. Dr dickinson again. What is the reason for dual diagnosis. To call for debate psychiatry v m.e cfs.

A neurologist had put me on 100 000 genome project for complex conditions. I am also been told i will see a neurogenetisist. I am nit a mental patient. Ive been vomiting for 8 yrs of drugs daily 1-2 x per day. But they wont help.

Im on a cto for another year.... how can i get off clozapene...

Hope..keep well all.
 

bohemian

Senior Member
Messages
133
I require help. I unfortunately tested abnormally for glycine antibody. Research has shown that is a marker/biomarker for progressive m.e..i need help about this. I am rigid with the antipsychotics but i believe 8 yrs of psycho drugs has caused this.
 

JES

Senior Member
Messages
1,320
I require help. I unfortunately tested abnormally for glycine antibody. Research has shown that is a marker/biomarker for progressive m.e..i need help about this. I am rigid with the antipsychotics but i believe 8 yrs of psycho drugs has caused this.

Lots of healthy people test positive for one or more autoantibodies. They are not biomarkers of ME as ME has no biomarker as of today. So I wouldn't be concerned at all about that one antibody.
 

bohemian

Senior Member
Messages
133
Thanks for reassurance... a prof of neurology and profs at oxford uni neuroscience assess the glycine issue. It may mean nothing why do they test for it.
 

JES

Senior Member
Messages
1,320
I should have been a bit more specific. I guess those antibodies can be used as clues for some diseases, although that would not cover ME because nobody knows what autoantibodies are present in ME. I doubt they can diagnose a disease based on just an antibody present, but it could maybe be part of the evidence.
 

Eastman

Senior Member
Messages
526
I think he's referring to this:

Redefining progressive encephalomyelitis with rigidity and myoclonus after the discovery of antibodies to glycine receptors.

Abstract
PURPOSE OF REVIEW:
This review highlights the recent discovery of antibodies to glycine receptor (GlyR-Ab) and discusses the relationship between these antibodies and neurological disorders.

RECENT FINDINGS:
Since the initial description in 2008 of antibodies to glycine receptors (GlyR-Abs) in a patient with progressive encephalomyelitis with rigidity and myoclonus (PERM), these antibodies have been found in PERM and in some patients with a variety of stiff person spectrum (SPS) or related disorders. Patients with GlyR-Abs often improve with aggressive immunotherapy, and antibody titres correlate with disease severity. Around 25% of patients have another autoimmune condition and 10-20% have an underlying malignancy. GlyR-Abs bind to extracellular determinants, are mainly Immunoglobulin G1 subclass and induce GlyR internalization in Human embryonic kidney 293 cells, suggesting pathogenicity. The spectrum of neurological disease associated with GlyR-Abs has not been fully characterized, and lower titres may not be syndrome specific, but GlyR-Abs, like antibodies to other neuronal cell-surface antigens, define immunotherapy-responsive disease and are likely to be pathogenic. This distinguishes them from the glutamic acid decarboxylase antibodies that can also be found at high titres in patients with classical stiff person syndrome which is more often chronic and relatively resistant to immunological treatments.

SUMMARY:
Irrespective of the clinical features, GlyR-Abs are helpful in the diagnosis of patients who very often have a subacute, progressive and life-threatening disorder which shows a favourable response to immunotherapy.
 
Messages
67
@bohemian, do you have an advocate? Are you in the UK? By UK law, you should be offered a mental health advocate every time they section you. You can also get an advocate in advance of being sectioned, for example if you know that your doctor is discussing it with a specialist.

Google your area and the words 'mental health advocate' and you should find the organisation(s) responsible. Explain your situation to them and ask if they have anyone who specialises in severe ME.

It requires two doctors to sign off on sectioning, so the other thing to consider is switching GPs. Finding an expert in ME might help.

Though not free usually, The ME Trust offers bursaries for private consultations with Dr Paul Worthley. He's a supporter of the biomedical model, and seems to understand the illness. Your first consultation is usually free, and he'll do it over the phone, so it's worth a shot.

Info here: http://www.meassociation.org.uk/201...seeing-mecfs-patients-again-23-february-2017/

If you get a supportive GP, that may be the first step in avoiding this in future. But an advocate is essential for ensuring you're listened to at this stage.

If the antipsychotics are causing you problems, perhaps it's better not to outright and openly refuse to take them for now, but just to flush them quietly? You can tell the doctor you're taking the drug, and how will they know, short of doing blood tests (which they can't force you to do unless they section you)?

If the side-effects truly are that awful, I would just stop taking them and try to find a new GP. Of course, there may be withdrawal effects, so do your research to see whether you need to taper the drugs or whatever. Abruptly stopping them might cause more problems than the drugs themselves.