The ME Association's continued support of the Sussex ME Society

In the NICE guidelines (right towards the end) it says:

"
Severity
The degree to which CFS/ME affects a person's functioning and daily life[13].

People with mild CFS/ME are mobile, can care for themselves and can do light domestic tasks
with difficulty. Most are still working or in education, but to do this they have probably stopped
all leisure and social pursuits. They often take days off, or use the weekend to cope with the
rest of the week.

People with moderate CFS/ME have reduced mobility and are restricted in all activities of daily
living, although they may have peaks and troughs in their level of symptoms and ability to do
activities. They have usually stopped work, school or college and need rest periods, often
sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and
disturbed.

People with severe CFS/ME are unable to do any activity for themselves, or can carry out
minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive
difficulties and depend on a wheelchair for mobility. They are often unable to leave the house,
or have a severe and prolonged after-effect if they do so. They may also spend most of their
time in bed, and are often extremely sensitive to light and noise. "

This was based on
A report of the CFS/ME Working Group 2002:
http://webarchive.nationalarchives....@dh/@en/documents/digitalasset/dh_4064945.pdf

In this report:
"A recent description has suggested four categories of severity in CFS/ME:
although care must be taken not to diminish inadvertently the experience of any
patient by descriptors of severity."

The description for mild and moderate are as appear in NICE.
NICE have combined the Severe and Very Severe descriptions into 'Severe'.

The report goes on to say:
"
Indeed, there may be severe impact on people’s lives even of less overtly severe
CFS/ME, as the descriptions offered by Cox and Findley3 for mild and moderate
CFS/ME suggest. Such patients may suffer most impact through the discrepancy
between what they were able to achieve previously and what they can now do."

"
Attempts by individuals to maintain activity close to a previous level of functioning
can be unrealistic and unsustainable. This realisation can cause additional distress,
compounded by the responses of those around the patient to the confusing signals
they receive, and the unpredictability of the patient’s levels of functioning."

This at least acknowledges that someones 'severity' is not static/fixed.

The Hummingbird severity scale goes further and has 5 levels of severity, (but also has two ability scales divided into physical and cognitive):
https://www.hfme.org/themeabilityscale.htm

I don't think any of them work terribly well in reality.

(ps found a nice quote in the 2002 report which maybe someone would like to tweet to MS(?))

“A Physician who does not admit to the reality of the disease can
not be supposed to cure it.” William Cullen (1710-90)"

 

Charles Shepherd has responded to the Daily Mail's recent recommendation of GET with a response that doesn't seem to fit with the MEA's social media policy, https://www.meassociation.org.uk/20...ecently-diagnosed-with-m-e-24-september-2018/

 

I think you are being a bit cheeky here @Andy.

 

I don’t know anything about this. Does anyone have a link to more info?

 

Maybe, but, unsurprisingly, I don't agree. When I'm well enough to post on the S4ME FB page, I always strive to post things that mirror what the majority of our members would be happy to see. While we have no official social media policy, I would argue that our social media reflects, as closely as possible, our forum "stance", and that is one of the reasons that I can't understand why the MEA do things in the way that they do.

 

Sorry @Andy, not being too serious.

I loved the irony in your comment.

I think you do a great job on the S4ME FB site though I don't visit it regularly as I get the info from the Forum.

 

I believe this refers to or is connected with the letter dispensing with Suzy Chapman 's services to the Forward ME Group.

If I am right then post#21 in this thread:
https://s4me.info/threads/forward-me-group-minutes-1st-may-2018.4384/page-2#post-78660

 

Sorry for the delay in responding. I had past my "use by" time, when I saw the post.

The reference given by @Invisible Woman is correct. This arises from the publication on the Forward ME website of what is said to be a personal communication to @Dx Revision Watch. The original letter contained warnings against publication, which were removed in the copy posted, and further alterations were also made. This is wholly unacceptable practice.

One would have anticipated that on reflection, after a suitable cooling off period, the poster would have recognised t,he problems. One would have expected member organisations to whose attention the matter was brought, to react appropriately. It appears that all condone practices which should not be countenanced.

I find it deeply disturbing if supposed member organisations are seemingly unwilling to "rock the boat".

 

I, too, have problems with the suggestion of yoga. Swimming and yoga seem to be suggested inflationally and stereotypically for everything. Nothing can be good for everything.

In my personal case, swimming is the absolute horror and absolutely strenuous, even when just swimming comfortably; even as a healthy person I had huge problems. So it's a huge questionmark for me why this is suggested for sick, obese, unfit or whatever people.

Yoga, if it's really yoga and not just relaxed beathing or Hatha yoga (which I can enjoy a lot), is so strenuous. For me, it was very painful, too, even before ME. I didn't get more flexible with time. But besides this, it is quite a muscle training (body weight exercises are most often for the advanced) - I really have problems holding the figures due to my muscle problems. Whenever possible I avoid yoga, although I can well understand that people find it pleasant.

I don't understand that yoga and swimming "hype".

 

I agree, this is likely what happened here:

A newly diagnosed girlfriend (of a friend of the family) was excited to go and get treatment (paid for by her parents, who were thrilled at the prospect of getting their daughter better). It sounds like she had LP.

Her rapid decline (and need to now use a wheelchair) has shocked family members and friends - two of them ex nurses who have never seen anybody deteriorate so fast!

 

Same here, almost exactly. I could (years ago, before illness progressed) do gentle yoga but after so long I relapsed and never recovered to where I was prior to relapsing.

 

Wow, the MEA have really cut to the heart of the issue here....

Code:

https://m.facebook.com/story.php?story_fbid=1921619477895701&id=171411469583186

 

The picture shows stretching, not yoga...
(I wish I could get thus far, but no, no way.)

 

His earlier response made me wonder whether he had misunderstood the criticism, was deliberately misconstruing it, or whether he was responding to comments made elsewhere which bore no resemblance to the views on this website.
,
Personally I have no views on whether people should undertake yoga. It is purely a matter for them. I have strong views about whether yoga should be suggested as an undertaking which, along with Lightning Process and god knows what else, might assist recovery.

 

They ignored my comments about the wider issues on Facebook I.e. no warnings, article also promotes LP, also helps to promote Colin Barton and his merry band of BPSers, etc, and this does exactly the same. Hugely disappointing.

 

Is it just me or have the MEA got noticeably worse over the last couple of years?

 

Perhaps too long in the tent...

 

Yeah, I wasn't saying I thought they weren't doing anything good stuff, but you're right to mention those things. I just got the impression they were being more 'inclusive' just when we'd finally reached the point where we were winning the arguments that some people were so incompetent that there was no reason to try to include them.