A Life Hidden - Blog posts by Naomi Whittingham

Thanks for sharing @Kalliope

 

Thank you for writing, @Naomi10

I really admire your writing and am looking forward to read the rest of the article series.

And thanks for adding the section summaries. I'm sure that made the text much more accessible for many.

 

I hope so

 

I particularly appreciate the section acknowledging that finding yourself in the presence of someone who listens and who presents as compassionate is not the same as someone who is without an agenda or bias as to why you are ill or what to do about it.

The BPS position has developed skill over time in relaying their views. It is a new kind of trap and a more insidious one. If people are left believing they are being truly helped 'this time' what will be the outcome when they realise they are not being helped in a way that heals (or even alleviates) but merely pacifies or worse. And yes sometimes the individual therapist has fooled themselves as well.

In many of the recovery stories that I see this is a theme. The person felt cared for and listened to.

While this attitude is an essential ingredient in good care it is not sufficient and only the beginning. At the heart of the problem is a disregard for the patient. A disbelief in their ability to be capable of knowing their own experience (even actively undermining that knowledge).

And sadly, sometimes (as vulnerable sick people) we co-operate with their superior knowledge even as the evidence mounts that it conflicts with the reality of what is happening to us.

But we have felt cared for.

And when this is done to children this represents a horrible breach of trust that IMO rises to the level of criminal.

 

@Naomi10

Great piece and so on point. I really look forward to the rest of the serie.

 

This is so true @Snowdrop.

 

Thank you @Oni

 

Thanks @NelliePledge. I had meant to alert them too. I think the upcoming parts on deconditioning and GET will be especially relevant to them.

 

Thank you so much for tagging us - I will have a look this weekend

 

Part 2

A Life Hidden: Beneath the Surface, Part 2

By Naomi Whittingham

https://alifehidden.com/2019/10/02/beneath-surface-2/

The second of a three part series analysing the British Association of CFS/ME (BACME) guidelines on severe ME. I have chosen to write extensively on this subject, as the guidelines encompass several themes that are important to me.

In Part 1, I highlighted some positive aspects of the BACME guidelines, as well as giving an overview of my concerns.

Here, in Part 2, I look more closely at the guidelines’ focus on deconditioning and graded exercise therapy (GET), as well as their failure to address issues of critical importance in severe ME.

As this is a lengthy piece and will likely be a challenge for those who are ill, I have once again included a short summary at the end of each section, for anyone unable to read the full text…

 

Great writing again @Naomi10

Small typo, "Careful planning an timing do..", "an" should be "and".

 

Just discovered your great website @Eagles. Hope your don't mind me copying this quote, amongst the many you list:



Precisley. pwME can produce energy, but they cannnot produce sufficient energy on demand. Cannot supply it fast enough to meet the real time demands their body needs. Insufficient power basically, especially for peak demand fluctuations.

 

Thanks @Andy. I’ll correct it. It’s amazing how hard it can be to proofread your own writing!

 

Excellent article @Naomi10, really good.

I cannot get my head round how any ME charity these days can still be peddling this cr*p. Do they really have no scruples? No common sense? No basic humanity? Suspect the answer to all of these is: BPS. There is obviously a lot of BPS influence from within BACME, but I'm sure there will be a lot from without as well - strings being pulled.

 

Oh god it's even worse ...

 

Thanks @Barry. As @NelliePledge says, they’re not a charity. In their own words they are “a multidisciplinary organisation for UK professionals who are involved in the evidence-based management of patients.”

 

Yes, thanks. Just been onto the website to bring myself up to date.