New MEA Guide: ME/CFS The Ten Key Aspects of Management | 05 February 2020

Absolutely.

But suggesting any type of "gain" is inappropriate and a dangerous path to go down.

 

Not only has ME caused me to have to split from some family members, lose friends it has also left me too unwell to have children. I might have been physically able to produce one, but certainly not capable of looking after it and because of the rift caused by ME I wouldn't have had wider family support.

That's before we get to the friendship lost and new friends I wasn't well enough to make.

That comment about gains is offensive. Considering the number of patients driven to suicide in isolation it is deeply so.

 

"...ME/CFS brings with it a lot of “losses” but it may also produce some “gains” – such as being able to spend more time with family. So it may be helpful to prepare a list of your losses and gains, and then work through how you are going to try and deal with these issue..."

Wow. Just wow.

 

what happened to their 'Real ME Photo Campaign'?

https://www.meassociation.org.uk/20...ion-real-m-e-photo-campaign-05-february-2018/

 

sounds like a dose of ACT therapy

 

The only "gains" I can think of are that I'm extremely unlikely to be involved in a road accident (given that I'm rarely able to leave the house), much less likely to be a victim of violent crime (for the same reason), and I am never at risk of getting sunburnt.

Wahoo. Yay.

 

Yes, offensive is how I would describe it, too. I've conveyed my deep concerns via MEA's Twitter.

And thank you @Sly Saint for a reminder of MEA's "Real Photo" campaign - I will remind them of that via Twitter, too.

 

I am told that the person who manages the MEA's Twitter account is "a social media 'influencer' but is new to M.E. and still learning the ropes".

 

I am not sure I would say that.

I think if I was someone who had recently developed ME/CFS I would find it confusing.

The first section seems to blur two quite different points that ought to be separate. One is that it is important to have a clear idea what is likely to be wrong (making a diagnosis doesn't really capture what this means in full). The other is not to ascribe new symptoms to ME/CFS without checking this is sensible.

The next section says most PWME should be managed by a GP. But why? Most GPs have no expertise in the field. I am not sure that GPs should manage anything these days. The residual role of the generalist is to sort out which patients need to see which expert. We don't have village blacksmiths any more.

I think it is very easy for patients and carers to feel intimidated and guilty when faced with a health care system that has completely collapsed for a lot of chronic illnesses. I think patient support charities should tell it as it is and help people to get what they are entitled to if at all possible.

The irony is that the MEA has been described by people like Chris Burton as a hotbed of mad militants.

 

I've just asked Katie, via PM, who is managing the MEA's Twitter feed, if she will forward concerns raised on Twitter to the MEA's Content Manager and Board of Trustees for their consideration.

 

Yep, that always makes me laugh. The same has been claimed about AfME and how the ME orgs are "powerful lobbyist" groups.

 

Yep. I agree.

However, even a sympathetic GP simply doesn't have the time, education or the expertise to manage ME patients in my view.

Specialist clinics (I mean ones that are actually fit for purpose mind - not CFS ones) can do a lot more to help patients get and stay as well as possible. At least from what I have seen in family members with chronic health conditions.

edit - they should also be part of a feedback loop so that NICE & NHS England have an accurate idea of what hurts and harms. Again, sadly lacking in CFS clinics.

 

I agree that a GP is likely to be better than a psychotherapist, but only to the extent that rather than 'managing ME/CFS' they may be honest enough to realise they have no clue what to do. I cannot see the basis for saying that people should be managed by GPs. They should be managed by specialists with extensive experience of the problem. At least I think people should be informed of just how much of a mess the current situation is and that the reason for not recommending referral is that it is quite likely to be worse than useless.

 

This, thank you.

 

Whilst few of the NHS England "specialist" CFS and CFS/ME clinics appear to offer little more than CBT/GET (and some of these have been decommissioned and replaced with MUS and PPS services) being managed in primary care also puts a patient at risk of being identified for potential channelling into integrated IAPT for CFS and LTCs (Long Term Conditions).

 

Exactly. That's what I meant but JE said it better.

That's the craziness if our situation. We end up asking for second best treatment, or even none at all, because our condition has been hijacked.