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 ?

Firelegs. I’m currently learning to manage my CFS, which has recently deteriorated. I love being out and about, walking, cycling or swimming. Over the past 6 weeks I have discovered that if I go out for a nice walk then I have to spend the next 2 or 3 days in bed feeling really dreadful. Whereas if I spend my days resting, in bed or on the sofa, I feel OK most of the time.

Please don’t tell me that I should be exercising more. It’s hard enough to have the discipline to rest when there’s an exciting world out there.

Totally agree scarlett

Watched the Afflicted series on Netflix someone upthread recommended - its interesting but quite annoying how its implying all the conditions are in the patients' heads though is how I find a lot of doctors when it doesn't appear in 1 of their 10 blood tests. Quite annoying how if you've ever had anxiety or depression everything is labelled as that. Last doctor told me as I had depression 12 years ago, it must be that, hmm, no.

why are you against the idea that it is a mental health condition? Mental health conditions are real and awful, why does it being a mental health condition deligitamize your suffering/experience?

It doesn't 'delegitamize [my] suffering/experience' it ignores it!

Like many other very long term sufferers I have said, a couple of time, I have no mental health issues. I have been stressed, anxious, depressed - I cured that by leaving the teaching profession. I had a specific stressor and I removed it. I do not have any global depression symptoms and never have!

If I thought for one moment that any part of my illness could be alleviated by addressing my mental health I would leap at it. But, as discussed with my GP, I don't, so it won't! Persisting in seeing mental health issues as cause rather than a symptom for some, but not all, ME sufferers, is to miss the point and, as I have said, prevents more focussed, effective research being done.

As for firelegs That makes me so very bloody angry!

After my ME diagnosis I was bed/house ridden for almost 2 years. For another 8 years,ish, I was incapacitated so much that I could work but had no other life whatsoever - work, home, eat sleep, work..... No 20 year old choose that - not when they are living independently and have a mortgage to cover!

After that I my symptoms continued to decrease andwas then an aerobics instructor. I loved it, earned at least half my living at it. Did 2 bloody degrees on exercise and health, did a lot of reading around ME, worked with the NHS as a specialist provider of exercise for people with a lot of different physical and mental health issues. I know that graded exercise ALWAYS kills off the ME patient, well, sends them to bed for at least a few day with a global malaise that cannot be thrown off.

Pacing is almost always taught so badly it has much the same effect, basically the 'teachers' don't understand the different effects and so accidentally / ignorantly push ME patients into doing more, more often, not pacing but working to increase exercise. THAT is not right!

I didn't willingly stop being an instructor. I woke up one morning and just couldn't get out of bed. After a couple of weeks I gave up my classes and have never taught since. I CANNOT exercise without getting The Malaise. Can you imagine that? I went form being a bit of a gym rat, a busy fitness instructor, a lecturer in sport psych and exercise and health to a couch potato, in one day!

Now I am self employed, I walk quite a bit within my job. I cannot do more. I have paced myself, I can JUST manage the day to day movement levels I set myself for my job. I do no more, I accept I MUST sit down, recoup, recover. If I don't, I end up in bed for a few days.

As Scarlet says, it is bloody restricting and I find it very hard to not do more, there is so much I would like to do. But, in my 50s, with over 30 years experience, I know better.

So please, of you REALLY do work with ME patients, do them a favour, send yourself off for some more/better education.

Not sure this has been mentioned but did you know that if you have or have suffered in the past from ME/CFS then you are not permitted to give blood.
Think this rather confirms that the condition is more than "just in the mind".

Yep, Scotblood class ME/CFS as a "serious illness" and a "neurological disease"

Sorry forgot screenshot

mumw

Really?

Dd wont be giving blood but thats cos she is a fainter plus now you've mentioned the ME

Ds1 is needle phobic

Pinning my hopes on ds2!! Would be nice if one of the coukd represent the family at the donation clinic

@imamouseduh and @KingKongNoWrong, this interview last week on Northern Ireland tv with ME expert Prof Montoya of Stanford Uni, USA (specialist in infectious diseases) in Northern Ireland for a ME conference last week is excellent in acknowledging the reality of ME being a physical disease, that it is not the mind producing physical symptoms as you claimed king and I presumed taught, and how severe it can be. He also stresses how the illness was wrongly portrayed as psychological and patients told to exercise when it in fact makes them worse. He says how the highest US medical institutes now have come out and recognised ME as a physical illness but sadly much of the medical community still have false perceptions about the illness as they have not been given the correct information. He is involved with the US CDC in devising correct education and materials for doctors on ME.

He believes research, including his own studies, is showing a dysfunctional immune system including inflammation which standard inflammation tests such as ESR and CRP don’t pick up. His studies are showing the brain is affected too and the gut microbiome is dysfunctional too.

@OneDoorCloses, you may find the video of interest too.

vimeo.com/292095947

I know the thread has moved on a bit and I am not going to get involved in any arguments about whether it's real or not - it obviously is, it's been classified as a neurological illness and anyone who claims it isn't real/ is all in the mind is uneducated at best.

In terms of work - do you have occupational health support? I have ME and have regular OH referrals to make sure I am able to do my job and to make sure I have the relevant reasonable adjustments. I have a set of adjustments agreed with my manager which include home working and flexible hours to tie in with days I need to vary how much I can work. At the moment it is going ok, I am managing to perform at a decent level despite constantly battling symptoms but it's much easier with managerial support. The ME Association has alot of good resources to help explain it to people, it might be worth printing something out from there and handing it to them so they start to become more educated?

Good advice Afrikat.

Join a union! At the end of the day, HR are there for your employers, not you.