Paul Jenkins, London Endocrine Centre

Shadrach Loom

Shadrach Loom

Senior Member (Voting Rights)
@josepdelafuente I wanted to ask you about this chap, but it might as well be on a dedicated thread in the right place. Hope you’re not irked to be summoned :)

I gather from your intro thread that he diagnosed you with ME, but did he display any interest in whether endocrinology might offer some sort of answer, if not immediately, then through research?
 
Hey, happy to be summoned!
Well I suppose the first thing to say is that he didn't actually diagnose me with ME, he diagnosed me with post-viral fatigue syndrome (PVFS).
I remember he seemed very confident that a good long rest would sort everything out. I didn't ask many questions, from what I remember.
I do remember getting a vague sense that he didn't really like or believe in "ME/CFS" as a useful diagnosis, although he definitely believed that my symptoms had a physical origin/cause.
He sent me for some cortisol tests to check for (if I remember correctly) Cushing's and Addison's disease(s).
They all came back fine.
I can dig out the actual letters and blood tests etc if that would be useful.
Once all the tests came back fine he recommended lots of rest, with very gradual increasing of exercise.
I wasn't particularly confident that things would improve, and they haven't really.
I stopped seeing him around April last year (April 2021), mainly because I couldn't afford to keep seeing him..
So to sort-of answer your question - I'm not really sure if he would be interested in whether endocrinology might offer an answer immediately or through research..
I would assume he would be, but that's just an assumption.
Sorry I can't be more helpful!
 
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Thanks, that’s extremely helpful, mainly because it has stopped me from wanting to talk to him. Even without any hope of a cure, I’d still pay a consulting fee to chat to an endocrinologist with a serious research interest in ME, but I think I recognise the aversion which you describe.

I encountered similar-sounding resistance to diagnosing and then discussing ME/CFS from a rheumatologist. It’s like importuning the local vicar for an exorcism - they may believe in evil, but they don’t really want to talk about demonic possession, and they are certainly not going to mess around with bell, book and candle themselves.

It doesn’t sound as if you missed out on much by not springing for any further advice from him beyond “lots of rest”.
 
My reductive take on Endocrinology and HPA Axis issues around ME/CFS:

1. As shown by @josepdelafuente's experience the Endocrinologists are involved only so far as exclusionary tests - when these come back as excluding the really nasty stuff that makes up main role of HPA services, the the Endo's see no need for further involvement.

2. Interest in the HPA Axis malfunctioning at more subtle levels has been appropriated by the psychs in terms of a 'stress response'

e.g =

Suppression of the HPA axis stress‐response: implications for relapse
B Adinoff, K Junghanns, F Kiefer… - Alcoholism: Clinical …, 2005 - Wiley Online Library
… stress-responses of the HPA axis in … of HPA axis dysfunction in alcohol-dependent subjects,
including recent studies from his lab demonstrating an attenuated glucocorticoid response to …

Blunted HPA axis response to stress influences susceptibility to posttraumatic stress response in rats
H Cohen, J Zohar, Y Gidron, MA Matar, D Belkind… - Biological …, 2006 - Elsevier
… to Lewis rats 1 hour before stress exposure yielded a significant decrease in the incidence of EBR. Thus, our results suggest that blunted HPA axis response to stress may play a role in …

Disturbances of the stress response: the role of the HPA axis during alcohol withdrawal and abstinence
B Adinoff, A Iranmanesh, J Veldhuis… - Alcohol health and …, 1998 - ncbi.nlm.nih.gov
… of the HPA axis to respond to stress, potentially … HPA axis, disorders associated with
impaired HPA functioning, and the combined effects of long-term alcohol consumption and HPA …

[PDF] Sex differences in HPA axis responses to stress: a review
BM Kudielka, C Kirschbaum - Biological psychology, 2005 - tahomaclinic.com
… dysfunction, which manifests in hyper- or hyporeactivity, and discuss some important
methodological issues in the study of acute HPA axis stress responses. We then outline … The role of the hypothalamic-pituitary-adrenal axis in neuroendocrine responses to stress

SM Smith, WW Vale - Dialogues in clinical neuroscience, 2022 - Taylor & Francis
… to control HPA axis activation and integrate the stress response. … In addition to glucocorticoid feedback, the HPA axis is … The stress response is also mediated in part by brain stem …

Stress response: Neural and feedback regulation of the HPA axis
JP Herman - Stress Science: Neuroendocrinology, 2010 - books.google.com
… medullary system, activation of the HPA axis, and activation of the immune … stress response
addressed in this article is but one component of an integrated set of responses to stress. The …

[PDF] Chronic stress and the HPA axis
TG Guilliams, L Edwards - The standard, 2010 - pointinstitute.org
… episodic or chronic exposure to HPA axis stressors in humans is … of the stress response have been published in the past 50 years, the simple observation that the same stress response …

Social modulation of stress responses
AC DeVries, ER Glasper, CE Detillion - Physiology & behavior, 2003 - Elsevier
… This review will compare HPA axis activity among individuals for whom social relationships
… of the HPA axis. Despite many examples of social interaction modulating the HPA axis and …

so while the Endo's might see ME/CFS as having HPA Axis involvement, they don't see it in the same terms as the (admittedly very horrible) childhood genetic diseases or later onset adult conditions which make up their existing patient lists. They see less serious possibilities as likely stress related and therefore in the realm of the psychs.

3. ME/CFS as an HPA Axis disease probably isn't a good fit, but there is perhaps a strong potential for a percentage of those diagnosed with ME/CFS to actually have HPA Axis diseases that exist at levels below that recognised by the current diagnostics.
 
CRG said:
3. ME/CFS as an HPA Axis disease probably isn't a good fit, but there is perhaps a strong potential for a percentage of those diagnosed with ME/CFS to actually have HPA Axis diseases that exist at levels below that recognised by the current diagnostics.
Click to expand...
That sounds about right to me. It took about 4 years before I was tested to rule out an endocrine disorder, and that was as a result of a lot of pushing to get seen by a specialist (an infectious diseases specialist, by chance). My cortisol and ACTH response were fine, but I think people with an endocrine disorder could report some symptoms that are similar to what I was reporting, so these are good things to check.

Looking at the cortisol levels reported in the many papers that keep testing and re-testing the idea that ME/CFS is defined by abnormally low cortisol levels, it is very clear that that idea is incorrect. The vast majority of people diagnosed with ME/CFS have normal cortisol levels. The scatter charts of cortisol levels results suggest that, while some people with Addison's/ other causes of pathologically reduced cortisol levels might be misdiagnosed with ME/CFS for a while, there aren't very many of them.
 
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