"Living with ME/CFS: The debilitating, invisible illness stealing women's energy" - Lauren Clark

Revel

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I recently came across this article, published in Women's Health magazine last year, that I haven't seen posted on the Forum (apologies if I missed it).

It is a daughter's account of her mother's ME, how it impacted the family and giving a brief history of the illness for the uninitiated. I thought it might be of interest, especially as a relatable 'starter piece', for friends and family of pwME?

https://www.womenshealthmag.com/uk/health/conditions/a36339506/living-with-me-cfs/
 

Jyoti

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Thanks for posting this, @Revel. I think the perspective is one we hear too little of--that of our children. Their losses are huge in many cases and those go largely unnoticed, as do we. On the other hand, this piece is somewhat problematic in that it a happy story--mom recovered and though she lost ten years of her life, all is good now. The dilemma of writing almost anything for publication in a newsmagazine like Women's Health--a story of adversity overcome is much better copy than the endless and relentless slog so many of us live.
 

Revel

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this piece is somewhat problematic in that it a happy story--mom recovered
@Jyoti, I read it that her mother has improved considerably, compared to her worst years, but still has ME. Her daughter mentions that she has "occasional crashes", which makes me think her "energy envelope" has expanded but that she still needs to manage the condition.
 

Jyoti

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I read it that her mother has improved considerably, compared to her worst years, but still has ME.
I agree. And I think the piece has loads of good info, particularly as an intro for people who are not familiar at all with ME.

And yes, it sounds like the mom just has to be cautious. ("I can’t deny that the transformation is astounding. Save the odd crash, I’ve got my mum back and it’s amazing. Girly days out are a joy and our lives no longer feel like they’re on hold.") She is not 'cured' but-- 'the transformation is astounding.'

I was reading this from my own daughter's perspective. Or perhaps other friends/family members. This mom found some kind of practitioner outside of traditional (and functional) medicine who advised her on diet and supplementation. Slowly but surely, she improved. And now 'our lives no longer feel like they are on hold.' I can hear the thoughts in my daughter's head, though: why haven't YOU gotten better, Mom? Are you not eating right? Are you not doing what you need to do to get better? It IS possible, so why are you still sick?

This is still a valuable narrative. And we probably all benefit in some ways from encountering stories of healing and moving on from the dominant sway ME holds over most of our lives. It does happen, and it is important to hold out the possibility that: it could happen for me.

In addition to appreciating the value of the article, I was simply commenting on the very human predilection for stories of hope. We are not much drawn to either hopelessness or unrewarded striving so such stories are not as attractive to publish as this one, which has a 'happy ending.'

Many of us here are striving valiantly--have done for years and years-- and yet have not achieved our longed-for goals of health.
 

Revel

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I cannot disagree with you @Jyoti, and I did hesitate about posting this link for the exact reasons you have brought up.

Those of us with a lengthy experience of this illness are only too aware that symptoms can fluctuate massively over time. We can potentially go from severe to mild and back again over a period of weeks, months or years, with no reason for these changes apparent.

The daughter's mother saw a naturopath and improved considerably over a 2 year period. However, we have no way of knowing if this was down to implementing the regime prescribed, a spontaneous remission, or a fortuitous mix of both?

Instead, an assumption is made within the article that isn't helpful and could potentially lead to patient blaming when we don't similarly recover or at least improve to some degree.
 
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Jyoti

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The daughter's mother saw a naturopath and improved considerably over a 2 year period. However, we have no way of knowing if this was down to implementing the regime prescribed, a spontaneous remission, or a fortuitous mix of both?
Totally true. And we don't know that she will be up for girly days out next year--or the one after that--- either. I hope she is!
 

lenora

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Hello everyone.

My daughters are now beyond what is considered middle-age. Just being present at their weddings was very taxing as I was having a "down period" for about 2-3 years.

Other years found me able to make trips abroad, but energy always had to be respected. In the end, I couldn't even go to my own mother-in-law's funeral. One of our daughters accompanied my husband.

I haven't been to either the UK or Europe since that time (about 22 yrs. ago). Often it's hard to explain what makes the difference....what does the disease do and why is it worse at certain times than others?

I've also had to get off planes because of delays and extreme fatigue.

I'm glad this mother/daughter had the chance to go shopping and out for lunch. Who knows what next year will bring. We can and do miss out on many important events. It has been years since I've been to any of my grandchildren's events and my daughters don't even expect me to make an appearance. At least they (seemingly) understand, I do hope so.

Guilt over these missed events does exist. It recently occurred to me that I can no longer climb steps....I've had a number of health issues so assume some of them are involved. I can picture myself doing so, but can't translate it into the needed action. Thus, I won't be able to climb up and down the stairs at my daughters newly refinished home (it seems like everything is downstairs....a long way downstairs). So there goes another opportunity, but she is understanding....at least I hope she is. She sends frequent videos and visits often with her family.

Change is a forever factor in this illness....and no, it doesn't end or at least it hasn't in my case. Still, we move ahead in the best of all possible ways. I hope you are all doing at least OK. Yours, Lenora.