• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
@bohemian. I'm tagging @MeSci, who I think may have had a similar sodium issue. I believe she was left untreated initially and was also accused of over drinking.

Very sorry to hear that things are no better for Brian.

I too had a abnormally low sodium issue come up on a blood test result and cause I pee a lot with POTS also got accused of over drinking (well I can drink a lot but it just like comes out of me). Then last year one of my hospital blood tests last year after I collapsed, then showed I my kidneys weren't functioning well they wrote down "dehydration" and told me to drink more after telling me that I was at risk of kidney failure cause I was dehydrated!

I feel so sorry for brian, its criminal that they've treated a ME person like that even if he did or does have other mental health things on top.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
When a person has been institutionalized for a long time there is often the need for some form of transition or rehabilitation before they re-enter the community.

That's probably the least of Brian's issue as he needs a way he can be maybe even permanently supported in the community physically before he could successfully live by himself, the kind of ongoing help any quite severe ME patient needs. Brian doesn't have family support like many at PR have.
 

mermaid

Senior Member
Messages
714
Location
UK
Ongoing support for mental health patients is abysmal in the UK. I am pursuing an official complaint (for the 2nd time) re neglect of my son's needs (he has Tourette Syndrome, schizophrenia, and dyspraxia) by a health Trust that has been in the news for the wrong reasons recently. Not sure if it's the same one as Brian's but he lives in a county fairly nearby. We live many miles from him and I do my best but it's hard going to support him as much as he needs (as we have needs too and don't travel well!).

He too was sectioned some 6 years ago, and has managed to stay out of going back in there. In his case they see to it that he has some injections/tablets (with side effects that incapacitate him as well as helping), and a fortnightly chat, but his social care needs are so far ignored, despite me ringing and writing letters about his self neglect. If he didn't have a good friend popping in to help, not sure where he would be by now!
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I too had a abnormally low sodium issue come up on a blood test result and cause I pee a lot with POTS also got accused of over drinking (well I can drink a lot but it just like comes out of me). Then last year one of my hospital blood tests last year after I collapsed, then showed I my kidneys weren't functioning well they wrote down "dehydration" and told me to drink more after telling me that I was at risk of kidney failure cause I was dehydrated!

I feel so sorry for brian, its criminal that they've treated a ME person like that even if he did or does have other mental health things on top.
There are so many potential causes of hyponatraemia, and UK (and Aussie?) doctors are useless at identifying and treating them.

I have just been in hospital with what seemed to me to be classic migraine symptoms, quite atypical of the ones I had previously with hyponatraemia, although I did also again have hyponatraemia. The docs have made no reference to my migraine diagnosis from last year and instead fallen back on their tired desmopressin/overhydration diagnosis, which I believe is rubbish. But migraine can cause natriuresis (sodium loss in urine) as can several other things, so this would seem the likely cause this time, on top of lifelong renal salt wasting.

So now I'm being told to avoid overhydration whilst being at risk of migraine (for which the recommendation is attention to adequate hydration) and suffering from a bad cold or flu apparently contracted in hospital (for which the recommendation is attention to adequate hydration). :confused:

The docs offered to give me desmopressin and test how it affected my blood sodium. I agreed enthusiastically. At last - we could test this theory once and for all. I waited....and waited....and instead they discharged me with no test. :bang-head:

Just examples...
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
The docs offered to give me desmopressin and test how it affected my blood sodium. I agreed enthusiastically. At last - we could test this theory once and for all. I waited....and waited....and instead they discharged me with no test. :bang-head:

Just examples...

that sounds quite typical, Ive had doctors at hospital insist I had a test Ive never had done before, I was relunctant as I was sure this one wouldn't find anything, I understood what was going on with me.. after finally convincing me to have the test and me then looking forward to having it as "just maybe it would show up a new thing" .. they then discharged me without doing it. (I forget now what it was but they were on my back so much about how I needed it, so I cant believe that did then did that and suddenly obviously decided I didn't or just got slack).
 
Messages
41
That's probably the least of Brian's issue as he needs a way he can be maybe even permanently supported in the community physically before he could successfully live by himself, the kind of ongoing help any quite severe ME patient needs. Brian doesn't have family support like many at PR have.
I agree with you Tania. That he got no help at all, of any kind, is scandalous and distressing. The UK may have signed the UN Convention on disability rights, but doesn’t seem to live up to its obligations.

E.g.
(j) Recognizing the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support

(n) Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices,

‘The Convention is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms.’

http://www.nidirect.gov.uk/index/in...rights/un-convention-on-disability-rights.htm

https://www.un.org/development/desa...-the-rights-of-persons-with-disabilities.html
 

Countrygirl

Senior Member
Messages
5,473
Location
UK
I am copying a post written by Daisymay as it is so relevant to Brian. No longer has his psychiatrist the right to inflict damaging treatments on him and he can no longer claim ignorance about the nature of ME as an excuse. (He doesn't have a leg to stand on anyway as Dr Byron Hyde travelled to Torbay to educate him about the disease. He was uninterested and ignored all the information he was given.)

Brian, do read this:

The Significance to ME/CFS of the Landmark Change to the UK Law on Consent

In March this year there was a landmark change to the UK law on consent which has significant implications for patients with ME/CFS. For full details of this change in the law please see the Supreme Court Judgement and related articles (1-8) below.

Consider the following scenario: an NHS fatigue clinic doctor prescribes CBT/GET to a patient, informing them that research (eg PACE trial, 9 ) shows that CBT/GET are moderately effective at curing ME/CFS with no serious side effects and CBT/GET are recommended by NICE.

The patient consents to CBT/GET, trusting that what he has been told by his consultant is accurate and complete. However CBT/GET makes the patient considerably worse and he takes legal action.

Under the previous law on consent:

"a doctor would not be negligent if the information given to a patient about treatment and/or a procedure was compatible with that which would be given by a responsible body of medical opinion, provided always that standard was considered reasonable by a Court." (4)

Therefore in the above scenario the doctor could have argued that he had complied with the law as he had followed " a responsible body of opinion", i.e. the view held by the UK psychiatric establishment and the NICE guidelines.

But with this landmark change in the law, hiding behind "a reasonable body of opinion" is no longer an option:

" The doctor is under a duty to take reasonable care to ensure that the patient is aware of any material risksinvolved in any recommended treatment, and of any reasonable alternative or variant treatments. The test of materiality is whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it" (1, para 87) (emphasis added)

Therefore a doctor can no longer just inform his patients of the risks based on the views of some researchers, he must inform his patients of all material risks found in all research and of alternative treatments. And ignorance of the facts is no excuse.

It should be noted that the Montgomery case, which led to this change in the law, was won not because the new law on consent was applied retrospectively but because the consultant was in breach of the GMC professional guidelines on consent which were extant at the time of the birth: (5)

"By allowing the Appeal, it has been recognised that the Supreme Court is reflecting what the General Medical Council (GMC) has been setting out in its guidance on consent to medical treatment for many years - to fully advise a patient of the options for treatment, the risks of each option and the benefits of the option, and it is then for the patient, not the doctor, to advise which option they wish to choose."(10)

All doctors, researchers and health professionals who have for years prescribed CBT/GET without fully informing patients of risks, alternative treatments etc have been in breach of these GMC guidelines on consent.


* * *

In the UK , CBT is mainly prescribed as in the discredited PACE trial : "to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant’s symptoms and disability", whilst GET is prescribed to correct the assumed deconditioning and exercise intolerance caused by these wrong cognitions. (11, 16) (emphasis added)

However, the scientific evidence clearly shows these assumptions are wrong: the disease is not perpetuated by patients' aberrant cognitions and behaviour, it is perpetuated by on-going physical disease processes and therefore the use of CBT/GET as treatments for ME/CFS is scientifically invalid and potentially harmful.

That ME/CFS is a serious organic disease has been highlighted in two major, independent reports on ME/CFS published earlier this year in the US:

1. The Institute of Medicine report: "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" commissioned by the HHS, NIH, CDC, AHRQ and the FDA. (12)

2. The National Institute of Health Pathways to Prevention report: "Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". (13)

Their conclusions were based on comprehensive reviews of over 9000 peer reviewed research papers and testimony from expert researchers and clinicians in the field. Both reports concluded unequivocally that ME/CFS is a serious physical disease, not psychological:

"The literature review found sufficient evidence that ME/CFS is a disease with a physiologic basis. It is not, as many clinicians believe, a psychological problem that should not be taken seriously. A primary message of the report is that:

ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts.

This message should reassure the millions of people with the condition that their concerns are, indeed, legitimate, while sounding a wake-up call to clinicians and research funders that ME/CFS deserves closer attention."(14)

"Other key findings...postexertional malaise, where exertion from activity (even seemingly mild activity, such as walking or active cognition) can trigger a “collapse” or “relapse” of malaise that lasts days or longer, far in excess of what would normally be expected. There may be a delay between the trigger and the collapse. Physiologic abnormalities after exertion are seen, which supports patient reports that forcing a person to “push” themselves can lead to profound exacerbation of symptoms." (14)

"These new criteria highlight the critical importance of postexertional malaise, which is so characteristic that the committee believes that the concept of exertion intolerance should be part of a new name." (14)

The recent MEA Illness Management Survey Report clearly illustrates not only the physical risks but also the mental and emotional risks of CBT/GET. Some might argue that the MEA Report is merely patients' subjective experiences of these treatments and therefore has limited validity, but the PACE trial and other studies on which the NICE guidelines are based, also used subjective experiences to measure outcome. A court of law would surely find that this report provides evidence of risks which any "reasonable person" (1, para87) would "attach significance to" (1, para87) and therefore patients should also be informed of this kind of evidence of risk. (15)

One patient in the survey stated:

“It was torture, and abuse. Nothing more. The idea that ME can be exercised better when in actual fact it caused me to be much worse is reckless as it put my health at serious risk. I was made bedbound by GET. I did GET because I trusted the hospital consultant, he made me believe that it would work. Therefore my informed consent to do the course was achieved through coercion – coercion that was based on misinformation, false statistics and unsupported claims directly made by X and X. This kind of claim is medical fraud, and on balance an abuse of patients’ rights. Had I known the truth about GET I never would have done it.” ( 15, Patient 676, p136)

If this patient, and others in the survey, had been fully informed as was required by GMC professional guidelines, and is now required by law, it ishighly likely they wouldn't have consented to CBT/GET and immeasurable harm and suffering would have been avoided.

It should be noted that the new law on consent also applies to other medical professionals, for example occupational therapists, physiotherapists, nurses, psychologists etc, who may also provide CBT/GET. They too could face litigation if they fail to adhere to this law:

" Doctors, and other healthcare professionals, are now under a clear duty to take reasonable care to ensure that patients are aware of all material risks. This judgment aligns the law with the guidance on consent set out by the General Medical Council."(6)


* * *

Finally, patients can now use this new law to help to defend themselves from being sectioned, or from being coerced into CBT/GET, and from health insurance companies wrongly claiming ME/CFS is a behavioural disorder curable with CBT/GET.

So for example, if a patient is being coerced into doing CBT/GET or threatened with being sectioned, he can now demand to be fully informed of the risks of CBT/GET as is required by law. CBT/GET would then be seen to be a potentially dangerous and scientifically invalid treatment while the doctor's view that ME is a behavioural disorder would be unsustainable. Furthermore, the patient's refusal to consent to CBT/GET would be seen as a logical and sane response.

In conclusion, this new law on consent means the status quo cannot continue. UK doctors must now fully inform their patients of all the material risks of CBT/GET or risk litigation. For the sake of both patients and doctors, the Royal Colleges, BMA, GMC, NICE and NHS health boards must act urgently to ensure their members/employees have the knowledge and training to be able to comply with these new legal requirements and CBT/GET should be withdrawn.
REFERENCES

References 3, 4 and 5 provide an overview of this change in the law and are a good starting place.

1. Full UK Supreme Court Judgement, UK Supreme Court documentation on Montgomery (Appellant) v Lanarkshire Health Board (Respondent) Case ID UKSC 2013/0136, 11th March2015
https://www.supremecourt.uk/cases/docs/uksc-2013-0136-judgment.pdf2. UK Supreme Court Press Summary, Montgomery (Appellant) v Lanarkshire Health Board (Respondent) Case ID UKSC 2013/0136https://www.supremecourt.uk/decided-cases/docs/UKSC_2013_0136_PressSummary.pdf3. UK Supreme Court Video of Judgement Summary 2013/0136 Montgomery (Appellant) v Lanarkshire Health Board (Respondent) 11th March 2015
https://www.supremecourt.uk/watch/uksc-2013-0136/judgment.html
4. Medical Defence Union legal guidance and advice - Doctors must ensure patients are aware of material risks, 16 March 2015, Ian Barker, MDU senior solicitor
http://www.themdu.com/guidance-and-...t-ensure-patients-are-aware-of-material-risks
5. Montgomery in the Supreme Court: a new legal test for consent to medical treatment
Lauren Sutherland, Junior Counsel for the appellant in the Supreme Court case of Montgomery analyses the case.http://www.scottishlegal.com/2015/0...-legal-test-for-consent-to-medical-treatment/6. UK Supreme Court Blog: Case Comment: Montgomery v Lanarkshire Health Board [2015] UKSC 11, Emily Dorotheou, 27th March 2015
http://ukscblog.com/case-comment-montgomery-v-lanarkshire-health-board-2015-uksc-11/7. BMJ Observations Ethics Man - Update on the UK law on consent, BMJ 2015;350:h1481, Daniel K Sokol, 16 March 2015 doi:http://dx.doi.org/10.1136/bmj.h1481
8. BMJ News - Doctors should not cherry pick what information to give patients, court rules
BMJ 2015; 350, Clare Dyer, 13 March 2015, doi: http://dx.doi.org/10.1136/bmj.h1414
9. PACE: a randomised trial, Professor PD White et al, Lancet, Vol 377, No.9768, p823-836, 5 March 2011, doi:http://dx.doi.org/10.1016/S0140-6736(11)60096-210. Clinical Negligence: A Change to the Law of Informed Consent, Robbie Wilson, May 05, 2015
http://www.drummondmiller.co.uk/new...ence-a-change-to-the-law-of-informed-consent/
11. TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study, By David Tuller, DrPH, 21 October 2015
Part 1 http://www.virology.ws/2015/10/21/trial-by-error-i/
Part 2 http://www.virology.ws/2015/10/22/trial-by-error-ii/
Part 3 http://www.virology.ws/2015/10/23/trial-by-error-iii/
12. US National Academies of Science, Institute of Medicine report: "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
13. National Institutes of Health Pathways to Prevention Workshop: "Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"Ann Intern Med.2015;162(12):860-865. http://annals.org/article.aspx?articleid=232280414. Redefining the Chronic Fatigue Syndrome, Professor Theodore G. Ganiats MD, Ann Intern Med.2015;162(9):653-654. doi: http://dx.doi.org/10.7326/M15-0357
15. ME Association ME/CFS Illness Management Survey Results, 2015http://www.meassociation.org.uk/2015/05/23959/
16. A request for data from the PACE trial
 

bohemian

Senior Member
Messages
133
Dear me cfs patients

I am currently being held at a residential hospital and i have choice but to take clozipene. They were giving me paliperidone and clozipene together in haytor unit i msnaged to get out of there in horrible condition. I thank you for your support. I may be put on a cto where i can be taken back to a unit. Hope all is well with everyone.
 

Countrygirl

Senior Member
Messages
5,473
Location
UK
Dear me cfs patients

I am currently being held at a residential hospital and i have choice but to take clozipene. They were giving me paliperidone and clozipene together in haytor unit i msnaged to get out of there in horrible condition. I thank you for your support. I may be put on a cto where i can be taken back to a unit. Hope all is well with everyone.

Hello Brian,

It is good to hear from you and you are very much in my thoughts. It sounds as if you are no longer in Haytor. Is that right? Where are you now?
 

bohemian

Senior Member
Messages
133
Hi out of haytor to cypress house in paignton. I wish we could write about my story with your literacy and knowledge on my thread. Its a struggle with this horrible drug - im treatment resistant apparently. Anyone in contact with lady mar.
 

Countrygirl

Senior Member
Messages
5,473
Location
UK
I haven't heard of Cypress House, Brian. I'll look it up. Did you ever find that large document we wrote about your case?
 

Countrygirl

Senior Member
Messages
5,473
Location
UK
You are correct why bother. They should give up and propose other methods. They think im a danger obviously. I did not find document.

Sorry about the document, Brian. That's a shame, although I suspect it is somewhere in the bowels of my defunct laptop and therefore, hopefully, on my external hard drive. It is of no use to you just now though, so don't concern yourself about it.

Have you asked for their reasons for persisting with these horrible drugs when they admit they do not work? It doesn't make sense to me, but we are talking about psychiatrists here, so perhaps I am expecting too much. :)

So they consider that you are still a danger to yourself. Are they preventing you from going outside again?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
You are correct why bother. They should give up and propose other methods. They think im a danger obviously. I did not find document.

Hi brian :) , I sent you a card once (I think it was for your birthday) I hope you go it. I'm very glad to see that they allow you to use computer and come here now. I'm in a very similar boat to you, unable to look after myself at home and Icant get the support I need to do so. Ive twice now sent myself to jail to be looked after.

Our situations are atrocious. I wish you the very best that someone soon they will give you the correct support. (no need to reply)
 

bohemian

Senior Member
Messages
133
Dear all thank-you for your kind help.

I am in a complex situation which i hope you will believe. Firstly i was due to see a medically unexplained symptoms dr bromley in russell clinic. They believe that 8 have cfs not m.e but this is untrue according to dr hyde who is visiting me in feb. I would like to make a press statement.

There are more sinister issues going on with tegards corporations and the government. It is a big issue me telling the doctor about assination or execution but i have had some formnof remote unclassufied weaponrt sround my body - skull stomach and kidneys and tissue. The doctors are saying all my symptoms are passitivity phenonenon. Its a big corporaton isdue about s british scoentist snd assinstion.

I wsd hoping vountrygirl could help. I sm writing and calling my em0loyer snd insurer tomorrrow for help and doctors. I will ring yhe pm and local mp but i need lady mar to help. The place i am staying have called the police so i might get some help. I was nearly a gonner in the dentist chair a few days ago.

Countrygirl and others have any ideas about neuroelectromagnetic wesponry. West hampstead woukd like a first draft og my story when i wad in l9ndon.

Yep i have psychiatry involved in m.e case mus and passitituvity phenomenon.

Hope you csn help