UK Dorset ME/CFS clinics

Trish

Trish

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Staff member
Dorset ME services

I am starting this thread to find out whether there is any information on what's happening in my local area at present.

I have not been in touch with the local services for over 10 years. Back then there was an outpatient clinic based at Wareham hospital run by OT's. All they offered was what I would describe as ineffective diary keeping and pacing-up style advice, and suggestions to try relaxation and/or meditation CD's.

The service at the centre was in groups who were basically lectured at and given homework, with a bit of discussion, but no real help on what to do with your activity diary. They also provided home visits for those with severe ME. We tried that, but it was just the same OT's chatting about the same diaries, pacing up and CD's. They had no understanding of severe ME.

There was no linking to the other sort of OT's who advise on or help obtain equipment or adaptations. As far as I remember this wasn't even mentioned.

I cut all ties with them when, at my last visit from the OT, she was enthusing about learning about LP from a local LP person who had invited her to sessions.

I have seen since some awful 'research' they were doing on a totally unsuitable sort of group therapy with severely affected patients. We have a thread on it here somewhere, I'll try to find it and link it.

The local support group was and I think is still quite active, and I went along a few times to the coffee mornings at a local cafe over 15 years ago. I didn't find them congenial - they were led by someone employed by the local group, but she made no effort to include new people, and spent the whole time chatting to people she already knew about her own non ME related health problems.

The local group has a website. They used to have an annual lecture, I don't know whether they have since covid. The most recent one I saw them enthusiastically reporting on was someone from the Optimum Health Clinic, a private London clinic which does nutritional advice and LP-like therapy. (we have a thread on them)

I have also seen somewhere that the local clinic employs someone part time who specialises in NLP (neurolinguistic programming - quack psychological therapy used in LP). Edit: See post #3 below.

So my conclusion is that the local services and support group have gone off at tangents into quackery.

I think it's time I learned more about what they are doing now, and what the plans are to implement the NICE guideline properly.

So my first move is to ask anyone else here whether you have more up to date information or experience of the Dorset ME/CFS services.

Meanwhile, I'll try to find out more online.
 
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Here's a job ad from September 2022

https://healthjobs.bmj.com/job/61914/b7-specialist-cfs-me-occupational-therapist/
B7 Specialist CFS/ME Occupational Therapist
Employer
Dorset HealthCare University NHS Foundation Trust
Location
Wareham
Salary
£24,995 to £28,603 a year p.a.
Closing date
4 Nov 2022
We are looking for a dynamic and motivated Occupational Therapist to join our Chronic Fatigue Syndrome/ME Service for 22.5 hours per week

This is an exciting development opportunity for an experienced OT to work in a specialist service supported by a small but close knit team who are specialists in this field. If this is of interest to you please do get in touch.

The current base is Wareham Hospital but some work can be done virtually/home based and we are open to discussion around this balance with the right applicant.

Main duties of the job

To provide high quality person centred care to adults diagnosed with CFS/ME in Dorset, using advanced clinical knowledge that is evidence based. To undertake independent assessment, management, intervention and review with these individuals (incorporating pharmacological considerations, where appropriate) making complex clinical decisions regarding intervention and clinical outcomes.

About us

[deleted section about Dorset NHS]

Job description Job responsibilities

For the main duties and responsibilities for this role please read the attached job description and person specification. When completing your application please ensure your supporting statement reflects the criteria set out in these documents by showing how your experience and skills apply to this post.

Person Specification Experience Essential
  • at least 2 years experience in working with Long Term Condition
Desirable
  • Knowledge of CFS/ME NICE guideline
Knowledge Essential
  • complex case management knowledge
Desirable
  • Knowledge of national CFS/ME support groups
Supervision Essential
  • experience of staff and student supervision
Desirable
  • Learning and Assessing in Practice Qualification or equivalent practice assessors training
Clinical Essential
  • evidence of capacity to assimilate information in order to make a clinical judgement regarding diagnosis and intervention.
Desirable
  • evidence of clinical reasoning skills
 
From BACME website, August 2022:

BACME Board Member Charlotte Adler Specialist Occupational Therapist BHSc Hons) Occupational Therapy, MRCOT, MBACME Charlie brings over 20 years’ experience in fatigue management and vocational rehabilitation to her role as trustee for BACME. She has worked in the field of CFS/ME in the NHS and in New Zealand in a mental health setting. She currently works part-time for the Dorset CFS/ME Service. Her particular interests are in helping to support people with poor sleep, anxiety and fatigue, and those who would like to return to work. She is a trained NLP practitioner and also uses mindfulness and relaxation techniques. She helps facilitate change in individuals, encouraging recovery and believing each person has the resources to succeed.

https://www.s4me.info/threads/unite...clinicians-in-me-cfs.7900/page-11#post-432009
 
From Graham's research on whether local services follow up patients:
Graham said:
When we carried out an FoI enquiry on all the ME centres, Dorset was unable to answer most of our questions. They did say that they sent out a "satisfaction" questionnaire to patients-9 to 12 months after they had been seen, and got about 10% replies.

It makes a mockery of the claims of so many clinics and specialists about their effectiveness when you find out just how little follow-up there is.
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From the Dorset ME support group website:

What treatment is available?
There currently is no treatment which provides a cure for CFS/ME, but a number of therapies have been developed which can significantly reduce the impact of the illness. If diagnosis is confirmed and you are referred to the NHS CFS/ME Clinic at Wareham Community Hospital, you will be offered a course of therapy and self-help advice tailored to your needs.

We have many members who have been very substantially helped in this way. Even if you have been unwell for some time and are severely affected, these techniques can provide some relief and improvement. The local NHS CFS/ME teams are continually updating their knowledge and techniques.

For children and young people who have developed the illness, early diagnosis and expert intervention is crucial. There is substantial evidence that early intervention makes a real difference to the impact the illness has, reducing the time lost from school, and hastening their return to a near normal life.

Dr Esther Crawley, a leading paediatrician specialising in the research and treatment of CFS/ME in children, considers that children have the ability to ‘grow through’ the illness to reach their full potential when given the right support. However, it is crucial that the illness is recognised quickly and expert help obtained. That help is available through the NHS CFS/ME Service for Children and Young People.
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I think this was the 'research' I remembered as involving the Dorset people, discussed in a thread from 2017:
Co-creating recovery in CFS/ME: A reflexive exploration of a Rebuilding your Life programme

It says it was done in Oxford, but several of the authors are Dorset based, including Dr Selwyn Richards, who as far as know was/is the doctor who does the diagnosis (since my time) and Michelle Selby who leads/led the OT team. She was the one we saw and who was getting interested in LP 12 years ago.
 
Way back in my early days of illness, I think in the 1990's, the Dorset support group was set up by some good people and I think the MEA was involved in helping get the Wareham clinic set up. Back then it was quite good in the sense that they focused on their version of pacing rather than going full GET/CBT, and it was run by OT's rather than psychs.

But by the time we were in contact, their version of pacing was very much based on find your baseline using a diary then start adding new activities each week, and I don't recall any warning about staying within your capacity, though it was a a long time ago.
 
From back before the new NICE Guideline, here's a post with a link to a document summarising the Dorset ME service:
https://www.s4me.info/threads/new-m...ent-05-february-2020.13499/page-3#post-235114
And a link to the document:
https://www.dorsetccg.nhs.uk/Downlo...e/02_GMS_0011 ME formally Chronic Fatigue.pdf

Note that there was is a strong link with the NLP stuff:
In addition to past published research studies the Dorset CFS/ME service has continued collaborating with Clare McDermott, Research Fellow in Primary Medical Care at University of Southampton with the aim of taking the Fatigue Management treatment approach forward and combining this with strategies and insights derived from the experiences of recovered and recovering patients; communication tools taken from Neuro-Linguistic Programming (NLP) to make therapy more accessible for patients, and to maximise cost effectiveness.  This research has recently been evaluated by a research team including Dr Clare Taylor (Lead Therapist, Bournemouth University) Dr Caroline Ellis-Hill (Senior Lecturer, Bournemouth University) and Professor Diane Cox (Professor of Occupational Therapy, University of Cumbria) with the aim of publication in 2013.
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Looking for more up to date information.

Dorset NHS Healthcare University
NHS Foundation Trust
Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME)

We provide specialist diagnosis, assessment, treatment and review for adults with chronic fatigue syndrome/myalgic encephalopathy (CFS/ME). We are focused on recovery, and work with patients to help them lead healthy, independent and fulfilling lives.

The service is available across Dorset. Our team includes GPs, rheumatologists and occupational therapists. Following diagnosis, we offer an occupational therapy led fatigue management programme.

A specialist children’s service is also available across Dorset at Dorset HealthCare :: Children and Young People's ME/Chronic Fatigue Syndrome (ME/CFS) Service

If you, or someone you know, would like to access this service, please speak to your GP.

The service works closely with the charity, Dorset ME Support Group.

Appointment booking
Once your GP has made a referral to our service you will be given a UBRN number. Please contact the service by emailing dhc.dorset.cfsme@nhs.net or by phone on 01929 557560 and provide us with this number and your contact details. Once we have received these details your referral will be placed under review with our consultant, once your referral has been accepted we will contact you to get you booked in for an appointment. During this time you may receive reminder letters from the Choose and Book Service, please ignore these letters we will not cancel your referral and are working hard to process your referral as quickly as possible.

Where, when and how often are the clinics?
For adults, ME/CFS diagnostic/review clinics are held monthly. Patients can choose face to face, video call or telephone appointments. Face to face appointments are held at Wareham Hospital.
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From a link on that website headed 'Useful Resources'

Useful Resources

Books
Fighting Fatigue: Managing the Symptoms of CFS/ME (2009)

  • Authors: Sue Pemberton and Catherine Berry
  • Publisher: Hammersmith Press Limited
  • ISBN: 9781905140282
  • Written by a healthcare professional and a person with a lived experience of ME/CFS this book offers guidance into easy-to-follow steps that can be worked through at the readers' own pace.
Websites
The Dorset ME Support Group: a registered charity with over 25 years of experience in helping local people to cope with ME/CFS.

Action for ME: provides lots of information about ME/CFS including advice about benefits, welfare and employment rights, local resources, and information booklets that can be downloaded.

The M.E. Association: a charity providing information about ME/CFS and funding research. They offer a wide range of information leaflets.

How to Conserve Your Energy: practical advice for people recovering from illness or managing long-term health conditions from the Royal College of Occupational Therapists.

Access to Work: an Access to Work grant can pay for practical support if you have a disability, health, or mental health condition to help you:

  • start working
  • stay in work
  • move into self-employment or start a business.
Vocational services: this is an occupational therapy led service covering the whole of Dorset. It’s for people whose long-term health condition is affecting their work options and who also have a work-related (vocational) goal.

Vocational goals could include finding ways to manage health needs in areas such as:

  • retaining current employment and exploring other options
  • returning to paid work, voluntary work or education
  • retraining for employment.
Referral is required by a health professional.

Dorset Pain Management Service ‘Together, we provide a range of services so that we can tailor what we offer to match your clinical and personal needs. We will support you to develop new skills to understand your body and deal with pain with greater knowledge and confidence. This will help you come to terms with your pain and adopt effective strategies for living life meaningfully’.

Steps to Wellbeing: psychological therapies for persons living in Dorset. This can include support and courses for patients with long term conditions and employment support. You can self-refer to this service.

Recovery Education Centre: Free educational based courses focusing on recovery, wellbeing, and shared learning. Courses have been designed to empower people to find hope, to see and embrace opportunity through building skills and to gain control by putting these skills into practice.

NHS Musculoskeletal Matters Self-referral

Live well Dorset: ‘we offer friendly, supportive guidance and advice, helping people across Dorset’

Help and Care ‘We are particularly focused on providing support to people living with a long-term health condition, carers and those who are isolated or housebound. What makes us different is our person-centred approach. We understand that each individual has different needs, so we work closely with people to understand what really matters for them and to help them lead independent and fulfilling lives for as long as possible.’

NHS Information
NHS Website: providing an overview of ME/CFS and its management.

National Institute for Health and Clinical Excellence (NICE) Guideline for ME/CFS: this booklet provides guidance about the care of people with ME/CFS in England and Wales.

Benefits and Entitlements Support Services
Citizen Advice Bureau: Dorset Citizens Advice | Citizens Advice provides free, confidential support and advice to people in Dorset

The You Trust: The YOU Trust - First Point Dorset Integrated prevention and support service.

Incomemax

Diverse Abilities: 01202 518635

Action for ME: 0117 927 9551

ME Association: 0344 576 5326

Government website:

Age UK:

Connection and Samaritans
ME/CFS can sometimes be difficult to live with. You’re not alone, if things get too difficult, please reach out for help.

Connections – a 24/7 helpline open to all ages - call direct on 0800 652 0190 or call NHS 111

Samaritans – call 116 123 if you need someone to talk to, they listen. Website –
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Trish said:
From back before the new NICE Guideline, here's a post with a link to a document summarising the Dorset ME service:
https://www.s4me.info/threads/new-m...ent-05-february-2020.13499/page-3#post-235114
And a link to the document:
https://www.dorsetccg.nhs.uk/Downloads/aboutus/finance/02_GMS_0011 ME formerly Chronic Fatigue/02_GMS_0011 ME formally Chronic Fatigue.pdf

Note that there was is a strong link with the NLP stuff:
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Ugggghh from a link to find out what this 'model' is: https://performancepartnership.com/nlp-communication-model/ - "The problem is never the external event. It’s the internal representation of that event. " - I struggle to think of anything more sinister and damaging it is just narcissistic opportunism if used towards those who are vulernable, ill, bullied, in horrible situations.These idiots are training people to invalidate at the same time as not helping such people and being therefre less bothered about feeling responsible for consequences of bad situations they create.

"Perception is Projection .......... So if we change our filters, release our negative memories, delete our limiting beliefs we can get different results."

"Memories are fragile. Police forces know it. They know they’ll get 30 different witness reports of an event because each of those people filter the event differently. They also know when they go back 6 months later, those same witnesses will all give a different report – and will swear the one they give today is the right one! You can’t remember something as a seven-year-old because you’re remembering it as an adult. Just your memory alone changes the way you feel, which changes the memory."

What a load of unevidenced nonsense. Police seek witnesses. If memory was that terrible as NLP seems to have to believe for their idea to work the whole justice system wouldn't work how it does. LOftus & LOftus has some work on eyewitness testimony (famous) and noone ever claims every single witness in every situation is 100% perfect but to pretend 30 different people give different accounts because of 'their filter' in memory is nonsense. You certainly shouldn't go using this fake claim as an excuse to manipulate people's memories

In addition to past published research studies the Dorset CFS/ME service has continued collaborating with Clare McDermott, Research Fellow in Primary Medical Care at University of Southampton with the aim of taking the Fatigue Management treatment approach forward and combining this with strategies and insights derived from the experiences of recovered and recovering patients; communication tools taken from Neuro-Linguistic Programming (NLP) to make therapy more accessible for patients, and to maximise cost effectiveness.  This research has recently been evaluated by a research team including Dr Clare Taylor (Lead Therapist, Bournemouth University) Dr Caroline Ellis-Hill (Senior Lecturer, Bournemouth University) and Professor Diane Cox (Professor of Occupational Therapy, University of Cumbria) with the aim of publication in 2013.
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It's almost a parody - I don't think of this there isn't a sentence that isn't the exact opposite of factually correct ie everything this service does and thinks seems 'deluded' - is there another term that encapsulates more politely to be completely getting the wrong end of the stick from every, single, angle.

goodness knows how they derived insights from recovered people - a contradiction in terms in all ways if they use NLP (ergo don't hear) and only from 'recovered'?

As if NLP makes communication easier. I have real concerns about scam, dodgy mind-bender schemes and how many people I know have got into them of recent years (part pandemic, part I think their jobs or seeking 'extra cash'). It really changes them - one became an aggressive unkind approach with no idea that is what she is 'because she still does it with a smile' whilst muttering the weird 'I'm not going to let others steal my happiness' when describing things that in old times would involve 'feedback opportunities' that maybe you might hurt someone or be unkind. I just find the fact that those in charge are doing nothing to stop this happenning really disturbing actually.

And it certainly seems almost designed to remove all empathy from any communication chain (the most key skill underlining being able to do any of those jobs) which would turn into basically treating people like objects you assume are deluded and whose 'reactions' to your behaviour are 'maleable' because 'the world can be what you want it when reality doesn't constrict you anymore, as you can now claim everyone else's is 'filtered''. Can you imagine trying to work with something/someone programmed to have that attitude in any arena if you were on the receiving end?
 
Children and Young People's ME/Chronic Fatigue Syndrome (ME/CFS) Service

We provide specialist assessment, treatment and review for children and young people with ME/CFS. We are focused on recovery and work with patients to help them lead healthy, independent and fulfilling lives.

The service is available across Dorset, with specific support for children, young people and their families. Our team includes occupational therapists, consultant paediatricians and a psychologist. If you, or someone you know, would like to access this service, please speak to your GP or other healthcare professional.

DCH_logo.png
Monthly clinics are held at Poole Hospital for families based in the East of the county and at Dorset County Hospital for those in the West. Following this, specialist occupational therapy treatment and intervention is available via video or telephone appointments. Face to face appointments are available in certain circumstances.
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From a link on that page:


Managing energy


Helping You recover and making the most of Your energy
Managing energy and activity is a key part of dealing with chronic fatigue and helps you to build a strong recovery.

Pacing your activities helps stabilise your symptoms and gives you a sense of control, making things more predictable. It helps you move away from the ‘boom and bust’ pattern of good and bad days, which can leave you feeling stuck in an unhelpful cycle.

Most people with chronic fatigue experience this at some time:

  • good day – more energy and feeling better
  • rest, taking time off, staying in
  • doing more, catching up
  • bad day – low energy, more pain, low mood.
Pacing works with your body to make the most of your available energy and avoids making your symptoms worse. Many people find that they begin to improve once they accept the changes brought on by their condition, and follow a realistic and achievable approach to getting better.

Pacing is a way of reorganising how you do everyday things such as attending school or college, keeping in touch with friends and other activities, as well as sleeping and rest. It can actually help you to do more things and feel confident that you will be able to do what you planned.

Pacing includes:

  • keeping a diary to show your activities now and any patterns in your energy levels
  • setting regular times for daily activities like sleeping, eating, activity and rest
  • working out amounts of activity that are right for you
  • gradually increasing activities as you feel able
Making the most of your energy
1. What is activity?
Activity is anything you do that needs energy. This includes:

  • physical tasks such as getting up, washing, dressing, as well as walking, travelling and sports
  • mental activities like watching TV, using the computer, school work, reading, concentrating and multi-tasking
  • social time, on the phone or computer, being with friends or family
  • emotional situations, having arguments, feeling low or anxious, or being under stress.
Just being in busy, noisy, bright or hot/cold situations can cause fatigue and can affect how well you feel and how much you can do.

Activities vary as to how much energy they take, and understanding this will help you to manage things more effectively.

2. Keep a diary
Keeping a record of when and what you do helps you to look at your own lifestyle, and plan changes that can help your recovery. You will be given an activity chart during your first appointments with the CFS/ME team.

3. Get organised
Before you make changes to your lifestyle it is important to be consistent about what you are doing. It is helpful to fix times for the regular things you do each day, such as your bed and wake times, meals and rest/quiet times. These form a firm structure for you to plan your activities around. This is the start of you being in control of when and what you do, rather than your symptoms dictating when you can do things.

4. Do what’s right for you
Stopping each activity before you get exhausted will really help to stabilise how you feel, avoiding the roller-coaster of good and bad days. There’s more on this under ‘finding your baseline’.

5. Finding your baseline
Your baseline is the amount of activity you can do without making your symptoms worse. This includes fatigue, pain and brain fog as well as anxiety or low mood.

To be effective your baseline needs to be at a level that you can manage on good and bad days.

At the beginning it might feel like you are doing less because you are staying with an average level of activity rather than following the highs and lows of the boom and bust pattern.

Boom_and_bust_pattern_of_daily_energy.png


A boom and bust pattern of daily energy – the baseline cuts off the highs and lows.



Each activity has its own baseline that will change as you improve.

A simple way is to set your baseline at half of what you can do on a ‘good’ day.

It’s also important to think about how often you can manage an activity through the week.

Some examples might be:

  • seeing friends twice a week for two hours.
  • walking the dog every other day for 10 minutes.
  • homework 20 minutes per night.
  • on the computer – one hour per evening.
Your therapist will be able to help you work out your baseline for all the usual activities and any extra ones that you do occasionally.

When you have set your baseline you need to give your body time to settle into this new way of doing things. This will vary from person to person, but it usually takes a few weeks. You will be ready to gradually increase when your body can consistently manage the levels you have set, without booming and busting.

Golden rule! Resist the temptation to do more on ‘good’ days.
6. Increasing your activities
Once you feel you can manage the things you have planned, without experiencing boom and bust days, you can start to increase your activity levels.

There are several ways to do this:

  • Lengthening the time you currently do an activity – perhaps extending how long you walk for, or do homework. Increasing by around 10% is a helpful guide, so if you currently use the computer for 30 minutes per evening, increase to 35 minutes. Remember not to increase everything at the same time as you might end up overdoing things.
  • Increasing how often you do something during the week – such as walking the dog twice a week rather than once.
  • Adding in an activity that you have stopped doing, or trying a new one. An example might be introducing a few stretches or exercises each day (your therapist can advise you on this), or making contact with an old friend.
7. The effects of changing activity
Our bodies react to change in many ways. You may notice that rather than feeling good or bad, you may feel just OK for a while. This is a good sign that means things are settling down and finding a level. You may also notice some extra stiffness or aches and pains. This is normal and is your body’s response to doing things differently.

Your symptoms will continue to be there for a while and your recovery will happen alongside them, so focusing on what you can do rather than what you can’t will really help you to move on.

It’s useful to be able to distinguish between the usual effects of increasing activity and the negative effects of overdoing things. Feeling stiff or achey after doing a bit more is normal and to be expected. If you notice you are having bad days after being active, then you may need to review your plan.

A good way to manage this is to go back to your original baseline plan and use that until you feel stable again. The Recovery Process in your resource pack explains this in more detail.

Increasing activity needs to happen at your pace – not to fit in with deadlines or other people’s plans!
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There are also links to documents:
Activity diary
Helping you recover: rest and relaxation
This includes:
Taking regular breaks forms part of your pacing programme, along with setting your bed and wake times, mealtimes and other activities. For young people we recommend around 20 minutes for a break, three or four times a day. After a meal is usually a good time, or after a busy part of the day – perhaps when you get home from school.
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Helping you recover: sleep
Which recommends cutting out daytime sleeping, 'you need no more sleep than your friends' and all the usual sleep hygiene stuff.
 
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Trish said:
Here's a job ad from September 2022

https://healthjobs.bmj.com/job/61914/b7-specialist-cfs-me-occupational-therapist/
B7 Specialist CFS/ME Occupational Therapist
Employer
Dorset HealthCare University NHS Foundation Trust
Location
Wareham
Salary
£24,995 to £28,603 a year p.a.
Closing date
4 Nov 2022
We are looking for a dynamic and motivated Occupational Therapist to join our Chronic Fatigue Syndrome/ME Service for 22.5 hours per week

This is an exciting development opportunity for an experienced OT to work in a specialist service supported by a small but close knit team who are specialists in this field. If this is of interest to you please do get in touch.

The current base is Wareham Hospital but some work can be done virtually/home based and we are open to discussion around this balance with the right applicant.

Main duties of the job

To provide high quality person centred care to adults diagnosed with CFS/ME in Dorset, using advanced clinical knowledge that is evidence based. To undertake independent assessment, management, intervention and review with these individuals (incorporating pharmacological considerations, where appropriate) making complex clinical decisions regarding intervention and clinical outcomes.

About us

[deleted section about Dorset NHS]

Job description Job responsibilities

For the main duties and responsibilities for this role please read the attached job description and person specification. When completing your application please ensure your supporting statement reflects the criteria set out in these documents by showing how your experience and skills apply to this post.

Person Specification Experience Essential
  • at least 2 years experience in working with Long Term Condition
Desirable
  • Knowledge of CFS/ME NICE guideline
Knowledge Essential
  • complex case management knowledge
Desirable
  • Knowledge of national CFS/ME support groups
Supervision Essential
  • experience of staff and student supervision
Desirable
  • Learning and Assessing in Practice Qualification or equivalent practice assessors training
Clinical Essential
  • evidence of capacity to assimilate information in order to make a clinical judgement regarding diagnosis and intervention.
Desirable
  • evidence of clinical reasoning skills
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First off they should at the very least change the disease name to ME/CFS. Although, "CFS" is a misleading, stigmatising, loathsome term that should be eliminated forever!
 
Trish said:
Dorset ME services

I am starting this thread to find out whether there is any information on what's happening in my local area at present.

I have not been in touch with the local services for over 10 years. Back then there was an outpatient clinic based at Wareham hospital run by OT's. All they offered was what I would describe as ineffective diary keeping and pacing-up style advice, and suggestions to try relaxation and/or meditation CD's.

The service at the centre was in groups who were basically lectured at and given homework, with a bit of discussion, but no real help on what to do with your activity diary. They also provided home visits for those with severe ME. We tried that, but it was just the same OT's chatting about the same diaries, pacing up and CD's. They had no understanding of severe ME.

There was no linking to the other sort of OT's who advise on or help obtain equipment or adaptations. As far as I remember this wasn't even mentioned.

I cut all ties with them when, at my last visit from the OT, she was enthusing about learning about LP from a local LP person who had invited her to sessions.

I have seen since some awful 'research' they were doing on a totally unsuitable sort of group therapy with severely affected patients. We have a thread on it here somewhere, I'll try to find it and link it.

The local support group was and I think is still quite active, and I went along a few times to the coffee mornings at a local cafe over 15 years ago. I didn't find them congenial - they were led by someone employed by the local group, but she made no effort to include new people, and spent the whole time chatting to people she already knew about her own non ME related health problems.

The local group has a website. They used to have an annual lecture, I don't know whether they have since covid. The most recent one I saw them enthusiastically reporting on was someone from the Optimum Health Clinic, a private London clinic which does nutritional advice and LP-like therapy. (we have a thread on them)

I have also seen somewhere that the local clinic employs someone part time who specialises in NLP (neurolinguistic programming - quack psychological therapy used in LP). Edit: See post #3 below.

So my conclusion is that the local services and support group have gone off at tangents into quackery.

I think it's time I learned more about what they are doing now, and what the plans are to implement the NICE guideline properly.

So my first move is to ask anyone else here whether you have more up to date information or experience of the Dorset ME/CFS services.

Meanwhile, I'll try to find out more online.
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@Trish
What trying experiences to go through.

Amazing, and yet maybe not, how people with what I hope are science based degrees, can fall for the clap-trap of the LP.

Show me the proof!
 
Moved posts

Trish said:
No, I have written about the Dorset service as I experienced it over 10 years ago.
https://www.s4me.info/threads/uk-dorset-me-cfs-clinics.32157/
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Ah I see. The Wareham clinic is the other NHS clinic I have been to more recently - about 5 years ago after a huge relapse. When I went it wasn't group sessions but 2 initial consultations with a doctor and then one on one sessions over multiple months with an occupational therapist. The doctor was poor and when I asked him about some neurological symptoms his explanation was that everyone has those symptoms but people with ME are more tuned into them. The occupational therapist was quite good in the sense she actually listened to me and treated me with respect.

The approach though was still based on a gradual increase in exercise but only based on what I could tolerate. I did get gradually better. The problem came when I would get a random relapse or dip, and as per their advice try and continue with the same level of activity. By the time I had a relapse bad enough that continuing activity at the same level rapidly accelerated my further deterioration - I was already discharged. So in the end this sort of softened version of GET caused me enormous harm.

From their perspective they would have seen an increase in activity and an increase in energy and concluded that the former caused the latter, when the direction of causality is the other way around. They never saw the catastrophic relapse that happened later and so in their books I'd probably be down as a 'success' story. I can kind of see how these services have misled themselves into thinking that they're doing good.
 
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