ME gets reclassified.

[Poppet11]

Just been reading that the illness ME/CFS has been reclassified as a neurological illness.

I don't begrudge them.

What I do begrudge is the fact we have a neurological illness and it's classified as a blood condition - one of the biggest misleading factors relating to the appalling treatment of our condition.

And I am also sick of hearing that 'we' have to prove we need more regular treatment. Where is the evidence, the 'research,' which shows the current protocols work in reversing neuro symptoms? Why can't we have referencing to that?

What on earth is going on that a condition such as ME - which requires no mechanical test to achieve a diagnosis - but it can reach the classification of neurological and, yet we have research coming out of our ears which proves and has done for decades, b12 deficiency causes neurological damage - yet we still have to 'prove' it?

There are thousands of us who have serious neurological injury resulting from b12 deficiency. Physical damage - and yet it is swept under the carpet. We are given nothing other than a bad name.

On the other hand if you have ME you can achieve a classification of being 'ill' - I have never achieved this distinction despite, amongst other things, having muscle and nerve damage which can clearly be seen. ME people can get sent on all manner of cognitive or relaxation courses.

We only want a 50p jab a week!

There is no, one, single solution to returning ME sufferers to economic productivity.

We have one and can't get it!

Isn't it about time that we got our reclassification?

Isn't it about time the health authorities started initiating research to help b12 deficient and damaged patients?

Isn't it about time THEY provided the evidence to prove their protocols actually WORK???

[helvella]

Have you got any references/links to the reclassification?

[Poppet11]

meassociation.org.uk/2014/1...

[helvella in reply to Poppet11]

Thank you

[engels]

I see that section 1.2.2.5 of the NICE guidance says states that tests for B12 and folate should not be done unless a full blood count and MCV show macrocytosis. Oh dear.

[Poppet11]

I don't think NICE know their a... from their elbow.

[engels]

That's very polite by your standards. You must be in a good mood today.

[KTMac]

Although in the nice guidelines they state

"1.2.2.5 Tests for vitamin B12 deficiency and folate levels should not be carried out unless a full blood count and mean cell volume show a macrocytosis. "

Is that right?

[KTMac in reply to KTMac]

Sorry , I musthave had an old screen open I posted that without realising someone already had

[Poppet11 in reply to KTMac]

Yep.

It's been like that for ages and at one bit we were being vocal about it.

Must admit I've lost quite a bit of empathy for the ME people - most particularly since my sister, who has it and hasn't worked for years because of it, and went to extreme lengths when I got injured with my b12 deficiency to tell people that I'd 'only' had a vitamin deficiency and I was all right now and was probably just a bit bonkers.

Apparently 'I' didn't understand her illness - no one does - but she can't work. Me, however, well, that's a different matter - she went to great efforts to make sure I did not get any support from the benefit system.

I ended up homeless with a wonky leg and she's sat sunning it getting her mortgage paid by mugs like me!

I sorta lost sympathy with the ME people after that. And we don't have a 'blood' condition, we have a 'neurological' condition - and we can prove it if we get some halfway decent doctors!

[KTMac in reply to Poppet11]

Looks like I have both <rolls eyes>

[Poppet11 in reply to KTMac]

I had both - I had to remind my sister of that. I still lost my home.

[Secondchance]

Can PAS help with this lobby?

[Poppet11 in reply to Secondchance]

I don't think that would work

amazon.co.uk/Martyn-Hooper/...

[Secondchance]

I don't understand. Why not?

[Poppet11]

The clue is in the word 'Anaemia.'

[Secondchance]

I thought PAS understood that B12 deficiency doesn't necessarily cause anaemia, especially MH. Didn't he have neuro symptoms?

[Poppet11]

I believe he did have neuro symptoms - he was also diagnosed with pernicious anaemia.

[Hillwoman]

Despite the risk of being flamed, I'm going to come out and say this is the thread that nearly put me off signing up to the PAS forum.

I read the thread as a non-member just after it was first posted and I was dismayed by the attitude to ME and ME sufferers. It's a subject I know quite a lot about, including the fact that WHO classified ME, the syndrome that can affect people after enterovirus infection, as a disease affecting the nervous system in 1969. The link given at the top to MEAssoc and NICE concerns the fact that NICE have been reluctant to accept the authority of WHO and the evidence for the classification.

This classification followed pioneering work by the late Melvin Ramsay, and others. If anyone wants to learn more about this, please head over to hfme.org - it's an excellent resource. On hfme.org you can also read about the differences between ME, for which there exist stringent criteria, and CFS. Many conditions cause CFS, as we know all too well. But we're not in competition with each other; all of us, all over HU forums and elsewhere, need help.

[Poppet11 in reply to Hillwoman]

Hi,

To be honest Hillwoman it's a difficult situation - ME 'now' has some creditials - It didn't have any when I was diagnosed with Yuppie flu in the mid 80s. So I've now walked this walk twice.

My point being relating to the B12 and ME is that you don't have a mechanical test to prove it. We do have a mechanical test and still can't prove it. What happened there?

Good luck to you with it all - but what about us? Where do you ever see B12 people outside of these forums getting any help?

We don't have any medical professionals on our side who are effective. We're not getting help getting benefits, getting physical assessments, getting treatment, getting anything acknowledged.

One of the first things it says in the original post, is that I don't begrudge what the ME people get regarding re-classification.

Which I think is rather big of me on a personal level -

My sister is an ME sufferer and she phoned my GP to tell her that she didn't think I was ill because I'd 'only' had a B12 deficiency.

My sister put every effort in to making people think I was crazy because I was insisting that B12 deficiency could cause serious damage.

That woman, stopped me getting benefits on purpose, because she thought "working harder would take my mind off it."

So, after losing my home and having half my animals destroyed because I could no longer keep them, and my reputation ruined, obviously - by an ME sufferer who can't work but thinks I should, I sometimes, just sometimes, want to hear about our illness and how it affects us, rather than people with anything else - and I do mean, anything.

So, that's where I'm coming from. I want the best for our people and I know that B12 afffects your people but I no longer have 'more' sympathy for any other sufferers of any condition because I think B12 patients are treated like the scum of the earth.

[Frodo in reply to Hillwoman]

Have only just seen this thread. Thanks for posting the link to hfme. The information on there I found terrifying in its implications.