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ME/CFS services in the United Kingdom

Discussion in 'UK clinics and doctors' started by Hutan, Nov 2, 2017.

  1. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,637
    What is on the website looks positive, but it would be helpful to understand what they mean by ‘rehabilitation’ given they provide ten week rehabilitation courses for adults and tailored individual rehabilitation programmes.
     
    bobbler and RedFox like this.
  2. Willow

    Willow Established Member (Voting Rights)

    Messages:
    87
    Location:
    Midwest, USA
    Yes, I would really like to know what their "rehabilitation programs" consist of.
     
    Ash, bobbler and Peter Trewhitt like this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    another job ad for this group
    ACTIVATE Team, Kingsway Health Centre, Stevenage, Hertfordshire

    Clinical Specialist Physiotherapist
    https://www.nhsjobs.com/job/UK/Hert...Pain/Musculoskeletal_Persistent_Pain-v4741163
     
    Wonko, Peter Trewhitt and Trish like this.
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    job ad London
    Highly Specialist Occupational Therapist
    https://www.nurses.co.uk/jobs/17891...university-college-hospital-london-nhs-trust/

    :grumpy:
     
  5. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    2,044
    Location:
    Aotearoa New Zealand
    In case anyone else is wondering what autogenic training is. Seems to be a form of self-hypnosis. Wikipedia has this (written by a true believer by the look of it)
    Can't argue with perceived quality of life and youthful skin, can you (sorry guys, the latter is for women only)

    https://en.wikipedia.org/wiki/Autogenic_training
     
  6. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    6,674
    Location:
    UK
    erm...aren't we already accused of paying too much attention to bodily sensations?

    and they want us to pay more attention, using some form of hypnotic state?

    as someone who has spent a considerable amount of time learning to ignore 'bodily sensations' - I'd probably be even crazier if I didn't - I can't see this helping much.
     
    Ash, EzzieD, alktipping and 6 others like this.
  7. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Ah but it’s ok when they tell us to focus on symptoms just not ok if we decide for ourselves because they know more about it than we do obviously
     
    Ash, bobbler, MEMarge and 10 others like this.
  8. Sean

    Sean Moderator Staff Member

    Messages:
    7,044
    Location:
    Australia
    Yes, it can only be done under the guidance of an expert. Patients are clearly too ignorant, biased, and foolish to be able to figure out how to live in their own body.
     
    Last edited: Nov 19, 2022
    Ash, Lou B Lou, EzzieD and 9 others like this.
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    Ravn, alktipping and Peter Trewhitt like this.
  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,522
    Questions need to be asked of NHS Herts and West Essex ICB Primary Care Board on their web information and approach to ME and NICE 2021?

    Have approached MEA and Charles to have a look.
    May put in a question from the , they are our adjacent ICS and part of Essex.

    We are Suffolk and N E Essex and it's confusing isn't it?


    The NHS Herts and West Essex ICB Primary Care Board meeting will be held on Thursday 24 November from 9:30am.

    Members of the public who want to register their attendance or would like to raise a question for the Board please email by 4pm on Monday 21 November.

    Papers will be available before the meeting.

    ------------------------------------------------------------------


    https://hertsandwestessex.icb.nhs.u...algic-encephalitis-cfs-me-inpatient-treatment


    NHS Herts and West Essex Integrated Care Board (ICB)
    Chronic Fatigue Syndrome / Myalgic Encephalitis (CFS / ME)
    Inpatient treatment

    July 2022 V1.0



    "Rationale
    There is limited high quality evidence relating to the effectiveness of this intervention in CFS.
    There is evidence of effectiveness from randomised controlled trials of cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Guidance on the management of patients is provided in the latest clinical guideline from NICE.

    should be aware of the NICE clinical guideline on the effective management of patients with CFS. Referrals to in-patient services for CFS will only be considered in exceptional circumstances as effective management is available locally.Treatments of unproven effectiveness will not normally be provided under the NHS."
    ------------------------------------------------------
    A presentation referencing ME and CFS....

    Long COVID and Rehabilitation

    https://www.activeessex.org/wp-content/uploads/2021/05/Long-COVID-v02-Ruths-presentation-.pdf

    What is chronic fatigue?

    Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms –the most common symptom is extreme tiredness
    CFSis also known as ME, myalgic encephalomyelitis
    CFS/ME can affect anyone including children and is more common in women, tending to develop between mid-20s and mid-40s
    Recognised before Long COVID


    Treatment for chronic fatigue
    A structured exercise programme graded exercise therapy new guidelines refer to exercise envelopes
    Medication for pain, nausea, sleep etc.
    Cognitive behavioural therapy (CBT)
    Most people with CFS will improve over time, especially with treatment, although some people do not make a full recovery
    It's also likely there will be periods when symptoms get better or worse
    Children and young people with CFS/ME are more likely to recover fully

    Ruth Barlow Respiratory Lead
    Mid Essex,
    Provide
     
    Ash, Daisy, bobbler and 4 others like this.
  11. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    6,674
    Location:
    UK
  12. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,522
    Please feel free to pitch in if you are in Herts/W Essex with a question!
     
  13. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,522
    MEA and others from area are willing to consider dealing with this.
     
    bobbler, Daisy, alktipping and 3 others like this.
  14. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,299
    Location:
    Canada
    Those kinds of lies from public officials are scandalous. There is explicitly no evidence that those treatments make any difference in outcome. In the end even many, when pressed, admit that this makes people "feel better", that this is not a cure. Even though they could go right back and say it in the next sentence without seeing any problem with the blatant contradiction.

    And yet here they are claiming explicitly that this is a cure, there is no interpretation for improving "with treatment" other than asserting that the treatment is what caused the recovery, this is how sentences are constructed. There is no more basis for this than saying that drinking water cures diabetes, on the basis of excessive thirst being a common symptom and that drinking water can relieve that thirst.

    The amount of lying in healthcare is excessive. Seriously excessive, even by normal standards of politics.
     
    Daisy, EzzieD, bobbler and 8 others like this.
  15. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,315

    So frustrating that it is being done local by local rather than a proper get shot of all the frauds and fake claims and paying for things that do harm whereever they are. Which is what needs to be done otherwise even the areas that might finish themselves off sorting their locality could find that whilst this lot still exists elsewhere they are vulnerable to what they've fought for not lasting long. It's exhausting but also not an effective way of sorting it ever, the grime will just keeping popping up from wherever it is allowed to keep festering.
     
    alktipping, Daisy, Wonko and 2 others like this.
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    Last edited: Nov 21, 2022
    RedFox, alktipping, Daisy and 3 others like this.
  17. Trish

    Trish Moderator Staff Member

    Messages:
    51,872
    Location:
    UK
    alktipping and Peter Trewhitt like this.
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    bobbler, alktipping and Trish like this.
  19. CRG

    CRG Senior Member (Voting Rights)

    Messages:
    1,857
    Location:
    UK
    Re: the job search result for Chronic fatigue - there's a standard UK Government "Reasonable Adjustment" statement which is what is likely triggering the result (I haven't checked them all :))

    "Reasonable Adjustment
    At DWP we value diversity and inclusion and actively encourage and welcome applications from everyone, including those that are underrepresented in our workforce.

    We consider visible and non-visible disabilities, neurodiversity or learning differences, chronic medical conditions, or mental ill health. Examples include dyslexia, epilepsy, autism, chronic fatigue, or schizophrenia.

    If you need a change to be made so that you can make your application, you should:Contact Government Recruitment Service via DWPrecruitment.grs@cabinetoffice.gov.uk as soon as possible before the closing date to discuss your needs.

    Complete the “Reasonable Adjustments” section in the “Additional requirements” page of your application form to tell us what changes or help you might need further on in the recruitment process. For instance, you may need wheelchair access at interview, or if you’re deaf, a Language Service Professional."

    Stockport NHS full job description: CNRS Specialist Physiotherapist Chronic Fatigue/ME

    pdf full spec: http://jobs.stockport.nhs.uk/documents?vdoc=6805642

    Responsibility for Patient Care

    To undertake Physiotherapy assessments for a designated caseload, including those with diverse or complex presentations/multiple pathologies; use advanced clinical reasoning skills and manual
    assessment techniques, to provide an accurate diagnosis of their condition.

    To work with patients to identify physiotherapy goals as part of the overall patient’s treatment.

    To plan and implement individual interventions, in collaboration with the patient, using graded activity to achieve therapeutic goals, within CNST Team.

    To plan and implement individual interventions, in collaboration with the patient, which could include advising about exercise, positioning at rest, Graded exercise approach is not recommended for
    individuals with CFS/ME and has been found to be harmful for some.

    To take delegated responsibility for managing patients with particular conditions and be responsible for providing specialist physiotherapist assessment and treatment plans for patients with these
    conditions.

    Assess patient understanding of treatment proposals, gain valid informed consent and have the capacity to work within a legal framework with patients who lack capacity to consent to treatment.

    Evaluate patient progress, reassess and change treatment programmes as appropriate.

    To discuss with patient and carers outcome of treatment and prognosis.

     
    Amw66, RedFox, Peter Trewhitt and 3 others like this.
  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    Cambrian Community Gym
    https://cambriancentre.org/health-referrals-to-the-cambrian-gym/

    exercise referral form

    https://cambriancentre.org/wp-content/uploads/2023/03/CCG-Exercise-Referral-Form-digi-v0.2.pdf

    @PhysiosforME
     

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