I'm writing this to help people out, and unite. I think people will agree with what I have to say, but 'forgot' we knew all along, as (per usual), no one helps us out as patients, and we have to do all the work ourselves, due to the people who are meant to help us (government specialists) focusing on fatigue - and thus, the title of this thread immediately to (most people with CFS who are female) would seem weird, but to males with CFS would seem honest.
Also note, that if this was about Women, no one would bat an eyelid, as Women's 'problems' are well established, respected and discussed (by Women) far more openly than men. The thread thus courted controversy, due to it being about men. Interesting, not because anyone here has any intentional discriminatory thoughts, but because this is how men have steered themselves, into oblivion (in sexual health) and society has just continued and supported this self censorship.
But we don't make progress unless we talk about.
Here is why the topic we're discussing is expected in ME males and when I say ME, I mean ME, not Chronic Fatigue, PEM, and one or more symptom (British CFS/ME).
Firstly I agree with Dr Shepherd that the unrelated and multiple chronic fatigue conditions contained within 'CFS/ME' in the UK or abroad for that matter aren't known to be associated to neuropathy, but inside 'CFS/ME' are many unrelated conditions which makes the lack of evidence of something, not definite.
For some patients then,sensory neuropathies are a symptom of ME and organic CFS - arguably this may be the wrong diagnosis, (they probably all have autoimmune ME/Lyme - including myself and not Fukuda CFS at all) however, due to disagreement over testing, and how CFS is said to be ME or CFS (of stricter CCC criteria/SEID) these patients are trapped within a 'CFS' type illness - be they males or females with 'numb genitals' or not.
For example, I myself have a neuropathic pain diagnosis, of which 'numbness' of the private area was reported years ago to my doctor. Naturally, I don't go around advertising this, mostly out of politeness and always as it's taboo.
The reason sensory numbness of the male private area is not known to physicians, even CFS specialist (biomedical researchers) is down to multiple reasons, I will now list to hopefully make people understand better, and perhaps understand each-other better. In other words, I think we are all in agreement, but we are keeping to our own ideas, because we all have bias, due to seeing ME CFS from our own perspective (normal) rather than a perspective of a complaint, practically no one would have heard of - so naturally it's rejected by many.
Here's what causes the skepticism in terms of rejecting 'penile numbness' is associated to ME CFS:
1) CFS and ME are predominantly affecting women. Women don't have mens reproductive organs. This massively reduces the reporting rates of what we are discussing here, because like it or not, CFS and ME are seen and researched (due to sex differences) as a 'Women's disease'.
2) Patients with ME exceed Fukuda criteria and are excluded from biological research. Thus....
3) The more severe you are the more likely you are to have nerve damage, or autoimmune CNS dysfunction which elevates pain. Numbness is one way people can report types of pain. Severe grade ME sufferers, are largely excluded from research also.
4) Genital numbness is a taboo subject as already mentioned and thus is rarely discussed with doctors never mind 'researchers' who due to point 1, would not have come across patients reporting such a symptom, and thus would think their patient is 'odd' reporting or even a little inappropriate if their patients are male and they are female, precisely because they do not expect such a claim to appear in discussions about ME or CFS. If they did, then it wouldn't affect their opinions at all. This is what happens in clinical practice as we all know, what medical professions know and expect you to have, always affects how you are treated as a patient.
5) Males in general, rarely report such things to their doctors, with females being much less 'shy', because women generally have a good rapport with other women about 'intimate' subjects. Men, largely, are bread to believe discussing such things is a sign of weakness or 'gay', and they learn this in the playground at school where girls in contrast learn it's OK to hug each other or hold hands when friends and this isn't 'gay', but normal.
This hesitance boys learn, stays with them into adulthood.
6) Logically, if patients with ME and/or with sensory neuropathies are trapped within a fatigue syndrome, of which is refuted to be organic in nature they won't in addition to this then be reporting embarrassing 'suspect sounding' symptoms, and thus few clinicians will ever have heard of such a thing - making the whole situation almost guaranteed to never be discussed. One exception to this is male impotence or ED. Men are now less shy to discuss this problem, which is you have ME CFS and are male, ED is likely to not be that a rare occurrence because normal functioning of the Autonomic Nervous System is required for male sexual arousal to work adequately for intimacy. Women are saved from this, and don't have to 'perform' to have sex, unlike men. NB: For those who may not have considered the obvious, if you cannot 'feel' your bits, then your bits won't 'work' due to lack of stimulation, which actually then means not only is pain an issue, but reproduction ability - so a serious matter.
All in all....
Again, due to points 1 and 2, the more sick you are, the more symptoms you get - but - you are excluded from ME CFS research. So, few would even be aware that there could be an epidemic of sensory neuropathy of a 'private' nature in subsets of ME CFS males but no one knows, primarily due to no research. With no research evidence, clinicians remain blissfully unaware what is going on in the patient community outside of what they read in medical journals like the BMJ/Lancet that focus on Chronic Fatigue, not the consequence of chronic low grade neuroinflammatory disease - such as ME and organic CFS. One consequence of chronic inflammation, would be CNS dysfunction.
The CNS when dysfunctional, of course, will create symptoms such as numbness, be it in the genitals, or in the face or other periphery - commonly the feet with 'shooting' pains and burning reported - again not a known ME CFS symptom, or should I said a recognized symptom. In my opinion this is it takes years or decades to develop peripheral neuropathy from untreated severe ME CFS, and thus the 'average' person with ME CFS isn't doing a 30 year stretch when it comes to researching 'CFS' patients with blood tests, brains scans and putting then on exercise bikes to test VO2 max. Nope.
Research has failed, utterly, to spot than in ME CFS - progressive subsets of the disease exist, as due to what we all know and as I've mentioned before, once you don't have unexplained fatigue, you get thrown out of the research studies - such as you develop Diabetes, Cancer, Heart Failure, Asthma, Seizures, Thyroid disease and nerve damage (neuropathies such as we're discussing here) as a consequence of chronic ME CFS - yet to this day, this still is not recognized.
Peripheral neuropathy, well not a single paper on 'ME/CFS' will report this, but critically here, not researching patients to confirm or deny, doesn't mean these patients don't exist. As it stands currently, there is no test for ME CFS, meaning I can set up a study, tomorrow to prove that neuropathy isn't associated to ME CFS by using Fukuda, using patients sick for a few years and by not permitting people with explained reasons for fatigue (many exist in ME and organic CFS) in my study. Easy. Once autoimmune tests come out, things will change. Researchers light bulbs will switch on in their heads, and they will think that's odd, don't MS patients get this, or don't Diabetes patients get this? And the answer will be yes.
What the human body can do to someone over 3 months vs 30 years is somewhat different.
In conclusion I hope this helps people understand that:
*Men are often trapped with embarrassing complaints that due to established protocols, they won't report.
*Both sexes with ME CFS aren't believed anyway, so the last thing they will do is tell a doctor.
*The doctor won't believe them, as there is no research associating their complaint to ME CFS
*The people who would have reported this, are usually to sick to see a doctor, so the doctor never hears of it.
Combined, the exact response we see in this thread occurred, not due to any nastiness, but due to the inevitable process of patients having different illnesses but all being told they have the same thing! Researching a far too wide spectrum of patients diagnosed with no test, and in addition excluding people with explained reasons of fatigue, (of which neuropathy is also associated to} will always end in situations such as the patients themselves, not realizing what's going on.
Meanwhile a tiny proportion of people get rich off our suffering - the confusion we experience everyday, from all angles. Science is meant to overcome this, but currently, politics is preventing real science from taking place, due to the paucity of funding, and due to an incorrect focus on 'fatigue' being the core problem.
On a lighter note, anyone with even basic clinical experience is well aware that neuropathy is felt in 'sensitive' areas, including the genitals, and thus if someone with an autoimmune disease claimed to have developed neuropathic pain in the genitals, I wouldn't be at all surprised.
As we know that 'CFS' and 'POTS' are increasingly linked to some kind of autoimmune process, then have confidence that the central nervous system damage you experience causing pain and numbness in any part of your body, although nasty, will be explained sooner rather than later
As is stands, that's all we can do for now until we find the pathogens/inflammation/immune dysfunction that causes so many problems, in a body.
Thanks.