ME/CFS services in the United Kingdom

MEMarge said:
Info on Systrom Pyridostigmine trial

https://www.clinicaltrials.gov/ct2/show/NCT03674541

Meeting abstract, 2016

https://www.atsjournals.org/doi/abs/10.1164/ajrccm-conference.2016.193.1_MeetingAbstracts.A5664
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Thanks, that gives arationale for pyridostigmine:

After diagnosis, patients are often treated with pyridostigmine (off-label use of this medication) to enhance cholinergic stimulation of norepinephrine release at the post-ganglionic synapse. This is thought to improve venoconstriction at the site of exercising muscles, leading to improved return of blood to the heart and increasing filling of the heart to more appropriate levels during peak exercise. Retrospective studies have shown that noninvasive measurements of exercise capacity, such as oxygen uptake, end-tidal carbon dioxide, and ventilatory efficiency, improve after treatment with pyridostigmine. To date, there are no studies that assess invasive hemodynamics after pyridostigmine administration.

So this is not to do with the sort of effect on muscle seen in myasthenia, but a speculated effect on cholinergic synapses in the sympathetic system. I would be surprised if venoconstriction in muscle during exercise made much difference to venous return during exercise but maybe it would.

I am not sure what it means for retrospective studies to have shown changes attributable to pyridostigmine. So it looks as if so far we do not know if it does anything.
 
Jonathan Edwards said:
I wonder if there are any data on pyridostigmine usefulness yet.
I don't yet see why it should help with oxygen extraction.
@Snow Leopard ?
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I think the justification for pyridostigmine is for postural hypotension, not CFS or ME. Studies in this case show lower parasympathetic drive of the heart and may show reduced pulmonary venous return. Also note the effect of demopressin: https://www.ncbi.nlm.nih.gov/pubmed/27401397

I'm not sure about the rationale for ME or CFS either. The capacity of skeletal muscle capillaries to dilate is greatly in excess to what could maintain reasonable blood pressure from arterial flow. So there is autonomic control to constrict the capillaries, however this constriction is also the cause of lack of oxygen pressure in capillaries connected to muscle fibres in larger motor units. So it is this (relative) construction that can contribute to exercise intolerance. At the same time, we don't want too much blood flow to muscles that aren't being used for the activity, so some vasoconstriction will help in that case.

"Regulation of Increased Blood Flow (Hyperemia) to Muscles During Exercise: A Hierarchy of Competing Physiological Needs" (this is a great overview that I just found)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4551211/

If the lower power at ventilatory threshold is due to poorer oxygen extraction on the 2nd CPET, then this could be due to a lack of vasodilation of the muscle capillaries and hence pyridostigmine and related drugs could worsen this aspect of PEM.

I think that reduced pulmonary venous return is not a cause of exercise intolerance in most CFS patients, but simply a consequence of deconditioning. It is notable that some studies do not find low VO2Peak compared to controls and population norms, which would suggest filling of the heart isn't a problem. VO2Max itself is entirely determined by the capacity of the circulatory system to deliver oxygen. So the capacity is primarily limited by fitness, genetic variation, severe diseases like COPD and certain heart diseases as well as effects like dehydration, anaemia, (or low oxygen environment). The oxidative phosphorylation capacity of major muscles during dynamic activity like cycling or running always exceeds the VO2Max, unless the participant has some sort of mitochondrial or related disease.
 
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job ad
Highly Specialist Occupational Therapist- Chronic Fatigue Service

Applications are invited for a 0.60 WTE - Highly Specialist Occupational Therapist to join a multi-disciplinary team within the Chronic Fatigue Service at Epsom & St Helier University Hospital.

The post holder, in conjunction with other members of the Chronic Fatigue Service (CFS) multi-disciplinary team, will provide a high quality service to patients with Chronic fatigue Syndrome, based on nationally recommended guidelines for treatment, in order to promote management of, and recovery from CFS (NICE, 1997).

The post-holder will be responsible for developing and delivering a highly specialised occupational therapy service to patients with Chronic Fatigue Syndrome working autonomously and without direct supervision, and being accountable for own professional actions.

This will be achieved by undertaking comprehensive patient assessments, providing intervention to a caseload of patients, delivering group lifestyle management programmes, graded activity programmes and through consultation, liaison, teaching and training to the team and other health professionals.

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"NICE,1997"?
 
Sly Saint said:
job ad

"NICE,1997"?
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I could not find anything related to that. Must be a typo meant to say 2007.

It's interesting to note the framing of "you will be responsible for your own decisions and only to yourself". No one's in charge or responsible for whatever happens, there is no consistency or broader understanding, just a series of individual consults where the therapist do their own thing, no one writes anything down and no one can be accountable, certainly not any institution or agency. "Following" NICE guidelines doesn't mean much in that context since the guidelines allow for basically anything, in the form of "individualized" treatment.

Kind of similar attitude to BMJ saying "readers are equipped to make up their own mind", delegating their editorial and review duties to the end-user, abdicating responsibility for whatever happens as a consequence.

"Don't ask us, we just work here"
 
Taunton care agency receives second 'outstanding' rating from inspectors
"
Blue Moon Care was ranked as 'outstanding'


A TAUNTON care agency which helps those suffering with ME has been rated as outstanding by inspectors.

Blue Moon Care Limited, in Hamilton Road, received an outstanding rating for a second time following an inspection in October by the Care Quality Commission (CQC)."
https://www.somersetcountygazette.c...eceives-second-outstanding-rating-inspectors/

their website
http://bluemooncare.co.uk/blue-moon-care/4584488461
 
Sly Saint said:
Taunton care agency receives second 'outstanding' rating from inspectors
"
Blue Moon Care was ranked as 'outstanding'


A TAUNTON care agency which helps those suffering with ME has been rated as outstanding by inspectors.

Blue Moon Care Limited, in Hamilton Road, received an outstanding rating for a second time following an inspection in October by the Care Quality Commission (CQC)."
https://www.somersetcountygazette.c...eceives-second-outstanding-rating-inspectors/

their website
http://bluemooncare.co.uk/blue-moon-care/4584488461
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Taunton's my nearest main town and I've never heard of them!
 
Trish said:
They seem to produce a couple of posters and say they run seminars. The local newspaper report says:

So it's very small scale. No wonder you haven't heard of it.
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I suspect it's been set up by a carer (or small group of carers) to maximise their social care/NHS Continuing Care Personal Budget. They don't seem to be active in looking for new clients.
 
Job ad (now closed) New addition to Crawleys team.
Consultant Paediatrician/Consultant Child Psychiatrist
NHS JobsBath, GB
Would you like to make a difference for children and young people with disabling fatigue? Are you interested in innovation? Do you enjoy contributing to research? Are you a fabulous team player who values the different skills of a multi-disciplinary team? If so, read below: An exciting opportunity has arisen for a paediatrician, community paediatrician or child psychiatrist to join our research intensive National Paediatric CFS/ME Treatment Service team.
Click to expand...

Most children get better with specialist treatment and the service here in Bath is able to offer the full range of evidenced based treatment. This is, therefore, a deeply satisfying role working with some of the most experienced therapists in the UK. The team aims to improve the evidence base and is at the forefront of research. We run large national trials, and a range of mixed methods research providing a varied range of opportunities to the post-holder to contribute to research and publications.
Click to expand...
The post-holder will join an experienced multidisciplinary team of Paediatricians, Psychiatrists, Clinical Psychologists, Occupational Therapists, Physiotherapists And Nurses. Whilst Experience Of CFS/ME Would be an advantage, it is not necessary as training will be provided. Experience in dealing with complex cases and disability will be an advantage. For an informal discussion about this post or to arrange to visit the department, please contact Professor Esther Crawley at esther.crawley@bristol.ac.uk or on 01225 821340.
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https://uk.linkedin.com/jobs/view/c...ant-child-psychiatrist-at-nhs-jobs-1678860127
 
Job advert at Royal Free (Gabrielle Murphy [on NICE guidelines committee]fatigue clinic).
This centre of excellence includes two psychology posts, two physiotherapists, a nutrition service, the practice manager, an administrative assistant and two physicians, as well as trainee psychologists and physiotherapists who do placements in the service throughout the year.

The physicians perform initial assessment and diagnosis with a view to referring to the MDT for treatment of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) and other fatigue syndromes associated with long term conditions (LTC) according to the evidence base and the NICE guidelines.
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https://job-openings.monster.co.uk/...l-london-uk-national-health-service/218605789
 
job ad
General Practitioner with Special Interest in CFS/ME
Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) Specialist Service
for South Yorkshire and North Derbyshire
GP with a Special Interest in CFS/ME
An exciting opportunity has arisen for one or two GPs to join the Specialist Regional CFS/ME Service, adult team, as the current post holder is due to retire in October 2020.
This post is unique as the GPwSI takes more of a consultative role offering expert guidance and advice for the CFS/ME clinicians within the team as well as to the referring GPs, who maintain medical responsibility for the patients they refer to the service.
The GPwSI role includes screening new referrals with the lead clinician and reviewing a limited number of patients, in clinic or by telephone, for half hour and hour appointments. This is a great opportunity to practice whole-person, collaborative medicine, integrating mind and body. The therapy team take responsibility for the treatment packages and the GPwSI supports and enhances the work with the CFS/ME therapy team - reviewing cases with the team and confirming CFS/ME diagnosis when appropriate.
The role includes an overlap with the current post holder to ensure a comprehensive induction with training, to gain experience and expertise as well as ensuring continuity of service.
The postholder(s) will be an integral part of a dynamic, committed and compassionate multi-disciplinary team which is therapy-led. The philosophy of the service is to work collaboratively with individuals to enable them to engage with therapeutic strategies which help them manage their condition more effectively. Interventions are time limited with a view to empowering the individual to continue to implement helpful strategies independently.
Click to expand...
https://www.jobs.nhs.uk/xi/vacancy/916096627
 
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