ME/CFS services in the United Kingdom

It sounds as if 'impaired systemic oxygen extraction' comes from this:

https://www.ncbi.nlm.nih.gov/pubmed/31493035

i.e. the Systrom group

and so maybe does the pyridostigmine.

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 ?

 

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

 

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.

 

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.

 

job ad

"NICE,1997"?

 

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

 

Taunton's my nearest main town and I've never heard of them!

 

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

https://uk.linkedin.com/jobs/view/c...ant-child-psychiatrist-at-nhs-jobs-1678860127

 

I'm hearing excellent things about the new consultant doctor at the Barberry at the Birmingham Q Elizabeth hospital. Apparently he sees it as a biomedical illness and rejects all psychological models. (Even though ME/CFS is under neuropsychiatry at that hospital.)

 

Job advert at Royal Free (Gabrielle Murphy [on NICE guidelines committee]fatigue clinic).

https://job-openings.monster.co.uk/...l-london-uk-national-health-service/218605789

 

job ad
General Practitioner with Special Interest in CFS/ME

https://www.jobs.nhs.uk/xi/vacancy/916096627

 

@Gecko does the Sheffield Group have anyone they would recommend to apply for this?

 

It doesn't sound as if there is a lot of point in bothering:

The postholder(s) will be an integral part of a dynamic, committed and compassionate multi-disciplinary team which is therapy-led.