Prevalence of and risk factors for severe cognitive and sleep symptoms in ME/CFS and MS, 2017, Nacul et al

Yes, but what sort of health care? Real care often gets withheld from ME/CFS patients by national systems, which is where it can be beneficial to be able to afford to go private.

 

I don't know of any specific healthcare for ME/CFS. I'd love to be wrong on this, that's why I'm here, looking.
[So although I am not in any way being treated for ME/CFS I did get simple things like melatonin to trial for sleep (I take only on specific nights when I know I'm crashing) and more regular doctor's visits and blood tests to keep an eye out for standard markers. My doctor has no treatment for ME/CFS. The only treatment I know of is rest and self regulated pacing. I live in a remote, quiet location and eat a balanced diet similar to what my grandmothers (who were long lived healthy) did. I try to keep up my social contact while reducing my exertions.]

My doctor's job is to make sure I'm not suffering from other problems that can be ameliorated.

[My job is to live a tiny, puttering, life in my prime and not go mad.]

Living in a country where evidence is required (and weighed against the strength of evidence and benefit for treatment of other medical conditions) before resources can be committed has been hard, but it has saved me from wasting too much of my limited functional time and energy on pursuing personal remedies when the real need is for shared investigation and replicated research.

[I sometimes wish my doctor gave me remedies, it would help me feel like I'm doing something to fight this thing. But really what I need is to know that they are listening and analysing what I'm telling them, combing through it for anything they can investigate further or treat. There are tests people in the US all seem to take like MRI with contrast on the brain to look for lesions etc. but here I can't get (except perhaps privately). Why? Because until the symptoms are even worse, the treatment for anything it could be is not yet indicated. I very seriously considered getting much worse in order to get a firmer diagnosis. Then I read the stories of those who have and are still without treatment. I realised that, ironically, most 'treatment' for ME/CFS is for the psychological benefit of feeling validated. Until we actually have research that identifies what is going on, who has what, and what we can and can't do about it, it's up to me to find non-medical ways to cope, to recognise the reality of my condition and treat it seriously, without medications, tests or treatments that are not yet indicated.]

If I have anything that medically indicated treatment, which research confirms is more likely to help than not, I would get it through the public health. Or I would be able to lobby for it. Or join a university trial for it. Etc.

Edits: just extra spacing for readability. I'm sorry this is long and probably OT so I won't keep going into this one here.
I'm not suggesting public health is always great, just that having your basic needs met is a factor in severity of illness.

 

Smoking--I expect it reduces oxygen to the brain through impairing blood vessels or? That may be its negative effect. But on the positive side, nicotine increases dopamine, helping neurotransmission. I think of the well known singer-songwriter Joni Mitchell who was partially paralyzed as a child from polio. She started smoking as a pre-teen and continues into old age. She regards it as a useful medicine for herself. Post-polio syndrome, as she must have, is a result of the number of neurons that were killed in the reticular activating system by the enteroviral infection.Dopamine is what keeps up the brain speed to a good operational level. In polio, the neuron nuclei that are left after the viral invasion send out a lot of extra axons to compensate for the nerve cells lost. Over time these over-extended cells lose power and efficacy resulting in Post-Polio Syndrome. Dr. Richard Bruno, a polio survivor, wrote a book speculating on the similarity in symptoms between CFS and PPS. Part of the interesting connection here to me has been that paralytic polio comes from one or two forms of the enteroviral cocksackie viruses. However, Bruno said that it has been thought (shown?) that a severe enteroviral infection that doesn't result in bulbar polio (and paralysis) can still damage part of the reticular activating system. The hypothalamus is right there too, so perhaps it is damaged at the same time.

My information may be somewhat out of date or not remembered entirely correctly, but there is an important story here for us, I think.

 

One interesting finding in other reports is that smoking rates are very different in ME, MS, and Depression.

In a UK biobank study on cognitive and sleep symptoms in ME/CFS and MS, the following percentage are reported as current smokers:

ME/CFS: 10.5%
Multiple Sclerosis: 27.7%
Healthy Control: 29.8%

In the US, 43% of adult depression patients smoke, which is roughly 2X the rate of the general population, according to the CDC.

Why is smoking higher in Multiple Sclerosis than ME/CFS? I have no idea. However, one clue might be that over half of Multiple Sclerosis sufferers report depression (53% in a 2017 survey).

 

And at the most basic yet critical level - a better mattress and pillow. Can make a big difference to sleephaving the right mattress or pillow but if you can't afford even that your sleep may suffer a lot.

 

I think our brain functions are on a knife edge, we manage only when things are ideal, any stress on the system knocks it over. Stimulants can be bad for ME, I think it was Dr Cheney who said that revving up a damaged system could make things better for a while but will be causing more damage underneath. The medication that helps me best all calms my brain and nervous system. Not managing to make myself clear, sorry.

Low income is most likely when you are too ill too work, and have problems with benefits so in ME it can be a sign of severity for that reason alone. It can also be a sign of single person households. I would be much sicker if I did not have my husband to help me. In a disease with MS struggling to manage alone is hard, but does not lead inevitably to worse symptoms; in ME the struggle leads to PEM and deterioration.

Most of the people I know with MS are not smokers so I was surprised at the results. Then I remembered them talking about having to give up when their hand function got so bad they couldn't hold a cigarette. Seems like the smokers in the study have less severe illness or they couldn't smoke.