Article in Guardian: UK benevolent funds hand out £216m as hardship grows - features Emily Beardall (AfME) Jan 2020

https://www.theguardian.com/society/2020/jan/20/uk-benevolent-funds-hand-out-216m-as-hardship-grows

 

I hope this is not the start of a vicious circle with ever deteriorating health, it was for me.

 

@John Mac, I can relate to your experience. Over the last thirty years I have had periods of remission followed by relapses, with each relapse worse than the previous.

With my first remission I had thought I was totally recovered. Consequently I tried to return to premorbid activity levels and took on significant commitments. It has taken me a lot of years to recognise any recovery might not be permanent. So it is important to plan your life even in recovery such that you can rapidly divest yourself of obligations and commitments if a relapse occurs.

We do not know what percentage of people who apparently recover will relapse, or what might trigger any relapses. However in retrospect I would have restricted activity even when apparently in remission, and certainly would not have taken on significant new commitments that took a lot of dismantling when unable to meet them.

[Added - for me the most important take away from this article is the need for support in adjusting to the condition and accessing ongoing support including benefits.]

 

Why is it that I always read relapses get worse? Why do we not improve? Is this reporting bias? Or is there a deeper issue with the underlying mechanism getting worse over time?

 

I do know two people who have improved. One quite significantly.

 

One option is that there is something happening during a relapse that causes some temporary impairment but also less pronounced permanent impairment. That some biological process is happening that behaves in a way similar to the relapsing form of MS. Certainly with myself I suspect now after nearly 30 years of ME there is some permanent neurological damage over and above the temporary brain fog, that is cumulative over time.

For me this is confused by the issue that I may have had one or more TIA. However my overall cognitive functioning even on a very good day is appreciably worse than than it was premorbidly. Certainly there is some data suggesting the brains of people with severe ME over time show loss of both grey and white matter.

 

Not really true in my case. I've recovered better function than before a couple of times, after a relapse forced me to rest for an extended period. The gains weren't enormous – and were almost certainly due to the rest – but they weren't a worsening.

My function now is somewhat lower than it was at the outset 44 years ago, but then I've aged a lot and added a couple of other conditions since then! If it weren't for that, I'd say my overall trajectory over the course of the illness, once the temporary relapses and remissions are removed, has been level.

 

in thirty years of having m e I have only gone downhill after every crash there has been no recovery to any previous functioning . I often wonder if actual recovery is just a euphemism for feeling slightly better than before. I would prefer to be able to do more rather than just feel a bit better some of the time .

 

I have been ill for many, many years so I have followed the life of a lot of people. ME is obviously a disease where energy production is broken for whatever reason and I don't that ever goes away.

With all the unknown factors involved how much free energy you have changes so if you have more battery power and less demands you will go into remission or at least manage a fairly decent life.

Paradoxically, if you have a big improvement you are more likely to do too much and get worse by forgetting that the ME never goes away and it is still a balance.

This is not unique to ME. Diabetes can be kept under control and symptomless by watching your diet or taking medication. I have dry eye problems which were very severe but by careful treatment and precautions I keep it under control. However if I loosen up the regime they come back as bad as ever.

The only exception in ME is people who have had EBV. They sometimes seem to have a complete remission in that they can now climb mountains or run marathons whereas most people can never go back to that sort of activity without consequence.

If our medical "experts" explained all this to patients, keeping within an energy envelope and being careful when we think we are cured there would be a lot less disability and suffering among us.

 

curiously no mention of AfME(?)

 

It's very likely that her medical records say Chronic Fatigue Syndrome not ME. Have we ever done a poll about this?

Also there's no such thing as NHS specialist treatment for ME so I find this highly misleading.

 

Not by the Guardian's standards! I think it's worth avoiding being too critical of things. There's plenty of truly appalling things to complain about.

 

I don't think it is worth having a poll. My GP is happy enough for me to call what I have ME and I was diagnosed with that in 1984 by a neurologist but the computer code in their system brings up Chronic Fatigue Syndrome as the name.

The average GPs probably doesn't care much about the name and I doubt if they understand the politics behind our objections.

Change will have to come at a higher level.