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

Avenger

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Dear members

I am writing to update.

Reading some of posts above about paediatricians and m.e sectioning. I should be fighting my corner with regards psychiatry and m.e and thus it may help the others in menral hospitals. I try and get publicity but no hope. All newspapers do t want to know.

Regarding my situation im off to see pots dr at the exeter hospital. Im not been well.

My crp level keeps coming back elevated in regionmof 25 -44 mg/l. Anyone habe any ideas.

If you can let me know how i can help the young and vulnerable with m.e then pleaer get back to me.

Bestwishes
Hi Brian, have you asked for a Fecal Calpractin test (Gut inflammatory marker; poo test) to see if you have any raised Gut Inflammation? Do you suffer any Gastrointestinal symptoms?

Best wishes, Paul.
 

bohemian

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Dear phoenix

Yes i have had the bowel test and it came back with inflammation refarding that test. Perhaps it is cardiovascular illness associated with injurous clozapine. There is alot of info on this.

I hope countrygirl is ok. Ive not heard. Hope she well.

Best wishes
 

bohemian

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Dear pheonix

Thank you for help. I raised question if people with m.e have raised crp. Also on top of this a raised plasma viscosity. I cant find much on me pedia so just wondering.

I hope people keeping well.

Best wishes.
 

Pyrrhus

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I raised question if people with m.e have raised crp. Also on top of this a raised plasma viscosity.
I believe some people with ME have raised CRP, but it is not a common finding in ME.

I also believe that some people with ME find they have viscous blood, but I don't think it is a common finding.

I hope this helps.

Best wishes!
 

bohemian

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Dear community

Does anyone know best person in uk gov to discuss m.e. does anyone contact the all parliamentary group for m.e. if you not in their consituency they wont talk. Does anyone know any m.e contacts in gov. Also any advicacy groups. I remember many years ago the activist group with jane bryant but i think she retired.

Does anyone have contacts with u.s.a cfids m.e groups in america or other countries.

Best wishes
 

Davsey27

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Dear community

Does anyone know best person in uk gov to discuss m.e. does anyone contact the all parliamentary group for m.e. if you not in their consituency they wont talk. Does anyone know any m.e contacts in gov. Also any advicacy groups. I remember many years ago the activist group with jane bryant but i think she retired.

Does anyone have contacts with u.s.a cfids m.e groups in america or other countries.

Best wishes
Have you considered leaving the UK if you are well enough to travel and have family/friends that can travel with you if you are being treated this way?
 
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Just read this whole thread, I'm so sorry you've had to go through all of this.... I feel very lucky to be in the position I am when reading the horrors of what you've been going through.

I'm also in the UK. It doesn't surprise me they have treated you like this the healthcare system here is awful. I agree with Davsey is there any way where you could safely escape the UK if you have the funds maybe thats the only option now if its been ten years and things keep getting worse?

This is a farfetched idea but if you were able to get to an open minded and caring country like Sweden which has good healthcare and explain your situation to a charity or healthcare professional there maybe they would be able to help you out?

Regarding Parliament I'm not sure if its worth the effort as the govt are incompetent and most probably will blindly support the decisions of the healthcare professionals who are entrapping you.

I pray that things will start to get better for you.
 
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bohemian

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Dear m.e community

I have seen the new nice guidelines on m.e have been released. I am not able to read through very long. Are poeple happy or not happy with this document.

I hope to see my pots physican this week. I hope to discuss the situation i never should have been through (psychiatry and the injurious medicine affecting my illness.

I hope every body keeping well and ok.

Bohemian
 

Hutan

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Hi bohemian,
the community on the Science for ME forum were very interested in the NICE guideline development process. The forum's press release (see below) might give you an idea about how many people with ME/CFS feel about the guideline. In short, it is a huge advance on the old guideline. It has quite a lot of greyness about whether CBT or exercise therapy is useful, but at least indicates that neither are curative treatments and sets out how the possible harm from these approaches can be reduced. The new guideline represents a compromise between what the evidence suggests and the level of change that the health organisations and clinicians would tolerate.

The challenge now is to use the change in the guidelines to get real improvements in the care of people with ME/CFS, both in the territories covered by the NICE guideline, and beyond. That's going to take determined and concerted action.

I'm sorry to hear that you have had such hard time, and hope things will be better for you.


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Science for ME press release: New NICE guideline creates hope for change at last

The National Institute for Health and Care Excellence (NICE) has today, Friday 29 October 2021, published the guideline for Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. This follows a two month pause to publication in response to concerns expressed about some aspects of the guideline by several medical professional organisations. A roundtable meeting was held by NICE on 18 October to better understand these concerns and make clear the soundness of the development process and resulting guideline recommendations. Following this meeting, NICE Chief Executive Professor Gillian Leng stated NICE is "now confident that the guideline can be effectively implemented across the system". Science for ME, an online forum for people with ME/CFS, clinicians, and researchers, has welcomed the much-anticipated publication, calling it a paradigm shift in the care of people with this debilitating condition.

The guideline replaces the existing clinical guideline published in 2007 and aims to improve awareness and understanding about ME/CFS, provide guidance on when to suspect it to enable earlier diagnosis, and includes recommendations on access to care, symptom management and care planning.

NICE staff and the members of the guideline committee have worked for over three years to carefully examine the evidence. Science for ME commended their efforts and the resulting guideline, saying, "we believe it will lead to significant improvements in the care and support for the estimated 250,000 people in England and Wales with ME/CFS. The new guidance on diagnosis and management is particularly timely, as many people are developing the key symptoms of ME/CFS after Covid-19 infection. The guideline is a publication of international significance, providing an example of good practice that will influence ME/CFS care around the world."

The guideline makes it clear that graded exercise therapy (GET) should no longer be offered to people with ME/CFS, and that both cognitive behavioural therapy (CBT) and therapies based on physical activity are not curative. This is based on a review of the evidence, which rated the outcomes for studies of these interventions all of low or very low quality. This is a welcome and significant, evidence based change in approach from the 2007 ME/CFS guideline, in which CBT and GET were central to treatment.

It is clear from the findings of the evidence review that neither CBT nor physical activity (or exercise) programmes are effective in treating or managing ME/CFS or its symptoms. Such therapies have also been widely criticised due to their potential to cause deterioration in people with ME/CFS. It will therefore be concerning to many that the guideline includes these therapies at all, albeit in a more limited way than before.

Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, University College London, said:
"I think the committee have reached an admirable synthesis in a very difficult situation. There is a need to preserve and extend specialist facilities for people with ME/CFS, making use of the experience of dedicated health care professionals, but there is also a need for a clean break with treatment protocols not supported by evidence and based on discredited theory. If future training of health care professionals genuinely follows the spirit of the guideline then a lot may be achieved. The break from theory-driven care needs to be real, however, not simply replacing a discredited theory such as deconditioning with another equally unsupported."

Recommendations focused on people with severe ME/CFS, who may be bed-bound, hypersensitive to light and sound, and in some cases require tube-feeding, should lead to significant improvements in awareness and access to care. Severely affected members of the Science for ME forum have welcomed this specific guidance with enormous relief, suggesting it will help them with engaging with social services, accessing both care at home and hospital care, and will make every aspect of life easier.

The guideline includes a recommendation on awareness of the prejudice, stigma and disbelief people with ME/CFS may have experienced and the impact this may have had. This is an essential inclusion, particularly in light of the current lack of knowledge and understanding of ME/CFS among health and social care professionals.

Science for ME has commented:
"We believe the guideline provides a detailed blueprint for the provision of more respectful and supportive care of people with ME/CFS, even though there are currently no treatments for the disease itself. But it will take a concerted effort to implement it. Better training and awareness should see an end to inappropriate assessments under mental health legislation and child safeguarding proceedings. We hope that clinical commissioning groups will review this guideline carefully and work with patient representative organisations to provide better, guideline-compliant medical services for people with ME/CFS, who have been poorly served for so long."
 
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