To ask what your views are on ME/CFS - do you think it’s real ?

[OneDoorCloses]

I’ve just spoken to my boss to let her know I won’t be at work again today as I’m suffering with symptoms .

I’ve worked all weekend ignoring the signs that I’m ill and now I’m worse .

She’s fairly new to our department but knows I have ME/CFS and our conversation went something like this :

Me: “I’m so sorry I can’t come in again today , I’m suffering with symptoms and I’m exhausted “

Her : “Is this to do with the mental health issues you have?”

(I don’t have any mental health issues)

Me: “No. It causes x, y, z and I’m exhausted”

Her: “You’re not due in until 3pm . Have a hot bath and a sleep and I’ll call you at 1pm to check you’re still coming in.”

Me: “It doesn’t really work like that ; I’m sorry I won’t be in.”

Her: (huffing and puffing) : “I’m going to need to speak to (higher manager) as this is getting a bit much . X has managed to come in with a fractured wrist so I can’t see why you can’t come in after some rest !”

X is my working partner . Each task is assigned two people .

To and fro it went with me trying to explain but it was clear she doesn’t understand .

I feel like this all the time when trying to explain to people !

Now I feel guilty and useless .

There is so much disbelief around this illness . The PIP responses I have to counteract are full of a tone which suggests disbelief - but it’s not that I’m lying - it’s that they haven’t understood how this illness works .

I wondered what other people’s views of it are ?

Do you get fed up of friends / family / colleagues with it ?

Emily but they cannot employ someone who is unable to perform at their job to the point it is detrimental to the company either.
Disability discrimination stops people being disadvantaged due to disability in comparison to those without disabilities. But you cannot be employed for a job you, with intervention and support, are still unable to do.

Yeah I don't touch support groups with a barge pole and nor do the people I know. Firstly I genuinely don't have the energy and secondly I can't be doing with negativity. As far as I can I just get on with it (although that has entailed starting to use a wheelchair to get about to enable me to look after my kids). I do follow ME/Fibro groups on social media for tips on how to improve things because due to a lack of interest from medical professionals I'm trying to help myself feel better as far as possible.

Oh and sans I think you're being unfair, before I had the RA plus Fibro dx I was investigated by a neuro for MS as some of my symptoms were so similar. Not everyone presents the same.

OP I'm wondering if once you get your pip back it might be worth going for ESA and your DH going for carers with income support top up? If he's that low paid you might be better off?

After a major infection in 2016 I have got used to a new level of functioning which is 2/3 lower than previously.
I see my day as blocks of energy and plan how best to use them. Eg, if I need to go shopping, then I use the blocks for that time but must also borrow them from somewhere else, say, cooking dinner. So we get a takeaway or have sandwiches.
I need to sleep EVERY afternoon, for about 2 hours. I am exhausted by night, and wake in the morning exhausted.
It is draining. I need to sleep now but I cannot as I have a builder coming at 1 30. My body is hurting and I am sat in a chair with my feet up.
My dr said it is age
I am 37

There's research being conducted at the moment into whether cfs and fibro are related to serotonin dysregulation.

www.verywellhealth.com/5-htp-supplements-715791

Bishop I don't mean me but the public view fibro patients as 'wannabes' when they compare to 'real' things like MS.
Similarly the previous comment about cancer being treatable could be construed as consulting-people die from some types of MS and cancer. Fibro doesn't kill, nor does ME.
BUT, I don't mean that as an insult, please don't take it as my judgement. I have challenged my own previous views and they are much more understanding-I'm referring to the public and their reactions to the FB memes and car stickers about 'Fibro not having me' as though patients are warriors of life.
I think there needs to be a medical awareness which informs the public and both conditions need to be made 'real' not malingering.
I am not sure how this can be done though. Because currently there are loads of people suffering, but when they voice that they are construed as attention seeking.
Do you have any thoughts?

Interesting, Fredella. I had to come off ssri meds years back as they caused racing heartrare, hot flushes and disorientation (pre dx).

Sans I can relate to that. I don't do Day sleeps in spring/summer but do in Autumn/winter. I use the chair for shopping so I can still cook. Pacing everything is key.

No idea, sans.... but I will say ME does kill. It's rare but it has killed. Those who died from it got to the point where their body rejected all nutrition then went into multi organ failure and at post mortem they couldn't find out why.

Oh really gosh I didn't know that.
Frightening.
If things like this were publicised it would go a long way to help.

@Powerless Do you? Hopefully that means someone somewhere has made a more sensible decision abut the effects of ME then!

But, way back in the mists of time, I was told to go away when I asked for financial help and, to this day, don't personally know anyone with ME who gets any aid unless they are bed / housebound.

There is hope for 'the system' it seems!

I have ME and applied for PIP a few months ago. I found the f2f so stressful and draining that I was useless for days afterwards, completely exhausted and the brain fog was so bad I couldn’t even do the simplest thing.

I got 0 points. I was too unwell in the time frame allowed to appeal, as that would mean going back to the CAB which I didn’t have the energy for, so that was that.

Interesting to hear others have successfully claimed PIP for ME, I don’t know where I went wrong.

@sanssherif when I was first diagnosed with MS I joined lots of online support groups and quickly learned that some people really did see it as some sort of I’m sicker than you competition it was all very weird.

CFSME is classed as a disability and therefore you are protected by the law. They have to discount time off for disability symptoms...it cannot be counted as a sick-day

bleedingblood is that correct ?

I thought it could be included in normal absence monitoring ?

My friend just got 0 points for COPD, depression, anxiety fibro and bedwetting.
I dont know what they are looking for, she can barely walk in winter.
She went to bed when they told her and hasnt got out yet

no it cant onedoor...our company policy states this...but it is cascaded from the law. I will try and find reference via google tonight. But if i cant, i will post tomorrow from work where it is easy to find. I feel endlessly lucky that my employer is supportive. I really feel for you. It is so stressful

Sansherif there's no indication that the OP cannot do her job, only that she needs time off for her Disability.

Any absence related to her disability should be treated separately to the sick leave policy of her workplace.

Onedoorcloses you should get a solicitor, and investigate bleedingbloods claim, before you go to meeting. even if you are 'phased out' you need to do it on the best terms possible. you need to find out your rights before they try to terminate your employment. ideally, you should get a representative.

if necessary, and if you can get it sorted in time (don't be bullied to their time-schedule) to bring a representative with you.

You dont need a solicitor, its a waste of money. You are protected under the Equalities Act 2010. I think it is covered under 'reasonable adjustments'. If you want representation and you arent in a union, then phone ACAS. They can write letters to your employer if it is necessary and will send a union rep to meetings with you and your employer

Thank you - I didn’t know that.

I will certainly look in to it.

So, it looks like you have to request the removal (or extension) of sickness trigger points as a 'reasonable adjustment...

m.acas.org.uk/index.aspx?articleid=6074

In our company you have to have an Occupational Health Assessment to establish that you have a disability...mine was just a phonecall, where i explained symptoms, diagnosis and reasonable adjustments were discussed

Give this to your employer. See page 15

<a class="break-all" href="https://www.google.co.uk/url?sa=t&source=web&rct=j&url=www.actionforme.org.uk/uploads/pdfs/employers-guide-to-me-booklet-2016.pdf&ved=2ahUKEwibwuHj8LXdAhVJIcAKHR34Cx4QFjAFegQICBAB&usg=AOvVaw3l2-mJJc6viBnZ48YWLT6m" rel="nofollow" target="_blank">www.google.co.uk/url?sa=t&source=web&rct=j&url=www.actionforme.org.uk/uploads/pdfs/employers-guide-to-me-booklet-2016.pdf&ved=2ahUKEwibwuHj8LXdAhVJIcAKHR34Cx4QFjAFegQICBAB&usg=AOvVaw3l2-mJJc6viBnZ48YWLT6m

toga it was actually what they said about carpal tunnel that didn't match what the NHS do. I think it's likely they work in another capacity and that's why they didn't name it.