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 ?

You should have separate disability sickness absence triggers or an adjustment to the 'normal' ones, if they haven't done that you certainly have an argument.

Unfortunately, employers don't usually allow enough time for this kind of illness even with the adjustments. The civil service have cut back on the number of days allowed quite significantly in the last 5 years. It's very disheartening as they used to be the best place to work if you're disabled!

That doesn't mean anyone is suggesting that cancer should be treated by CBT or talking therapy. Just because something presents as a causal factor doesn't mean it follows that treating the cause will solve the problem.

@imamouseduh, in my haste to reply to you earlier today, I forgot to address the part of your comment I have posted above. I agree nobody does suggest that cancer can be treated by CBT or talking therapy. However, this is exactly what a group of influential medical professionals, mainly psychiatrists have suggested and pushed for people with ME. They claim a virus may have triggered the ME but the virus has gone and patients have developed false illness beliefs that activity above their limits makes them more ill and so they become de conditioned too. They suggest CBT to address their alleged false illness beliefs and a course of graded exercise. These treatments were included in the flawed NICE guidelines for those with mild or moderate ME. A £5 million PACE trial was carried out examining graded exercise and CBT on mild and moderate patients. The results on reanalysis showed as patients knew they did not help.

Finally the guidelines after years of campaigning are being reviewed. These psychs came up with their biopsychosocial deconditoning theory with no evidence ignoring the biomedical research and patients consistent testimonies that activity above their individual limits made all their symptoms even worse and they felt even more ill. Many people with ME have gone from moderate to severe after being put on harmful graded exercise problems. More recent biomedical research has shown problems in metabolism and abnormal readings on the second day of exercise testing which match with patients reporting normal levels of activity before they became ill now make them worse.

I don’t see the psychs giving it up that easily. Look at how they are fighting the retraction of the PACE study. They can’t admit they were wrong without looking bad at this point and without it looking like they’ve basically set research back.

Namechanged for this! braces self

I think it is a real thing. I think t is primarily a mental health issue. I have experience in working with and diagnosing people with ME/fibro/ccs, and I’ve found that many are very dismissive/reluctant to discuss mental health or accept that mental health is a factor, and instead focus on the physical aspects.

To the person who said that a new study was looking at the role of serotonin receptions - low serotonin is found in depression, medications like fluoxetine (Prozac) Work by increasing the amount of serotonin (‘happy chemical’) in the brain.

It’s an awful illness as people suffer for years. The people I know who’ve got better have embraced the mental health side of the illness, taken antidepressants and engaged with therapy.

A question for the sufferers on here sharing their story and experience (if relevant) - 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?

I know one person who has ME, and I feel desperately sorry for her. But she also has some mental health issues, which remain unaddressed due to the fact that she hides behind the ME, so it's difficult. I mean the fact that she has ME, which I believe, leads her to not address other issues in her life. It's hard though, I do sympathise, but she isn't fair on those around her.

I do think it's real..

But I also think that employment and chronic illness simply do not go together.

An employer needs a reliable person, who will predictably turn up and out-put a certain amount of work each day.

A person with chronic illness just can't do that.

I dunno what the answer is, because I feel awful for both employees with chronic illness, and employers who with the best will in the world will spend more money trying to employ that person than employing a healthy person.

The world needs to take a different view of work than it currently does!

Scattered thoughts

That resonates with me. Reading these replies are really interesting, as lots of the focus seems to be ‘how dare true moloyer expect you to come in’, and focusing on needing time off/time in bed.

I can think of people I know with different illnesses who are desperate, desperate to work and see each day off as a real worry/failure on their part, despite having cancer, or Crohn’s disease, or Lupus.

I think struggling to cope with the demands of modern life is a big part of the illness, as the stress we are under as a society is unbelievable.

I think the focus should be, like with any illness, how can we get you living your best life? How can we get you to work? It’s ok to turn up and just cope, you don’t have to be at your best everyday. Encouraging people to take time off and lie in bed is not helpful - one of the core tennents of treatinng fibromyalgia is increasing excercise tolerance, and getting people to do more.

I don’t think it’s a reasonable expectation that employers fund a full salary for people who are unable to do the job, and part of the job is being reliable. Reasonable adjustments must be made, i.e time off for hemp, altered hours if stuggling with long shifts etc, but melters can’t be expected to pay £30000pa to someone who is constantly off.

I’m sorry you are having a rough time OP. You can get better, go back to the gp and discuss the treatment options available. People can and do recover.

All the best

grrrrr..... I have ME. I do not have any mental health issues!!!!!! Its important to distinguish for me - because its INACCURATE!!!!! Also, for medical research purposes - 2 decades were wasted with CBT and other crap because of Dr Simon Wessley deciding it was a mental health issue.

Firelegs you say many are very dismissive/reluctant to discuss mental health or accept that mental health is a factor - the reason is probably because you are barking up the wrong tree. I've had to deal with people like you and its so frustrating and patronising.

I've known lots and lots of people with ME/CFS. I would say there is a subset with MH issues, whether thats in addition or because they have been misdiagnosed I don't know. But most people have not. They were just "normal" people with no MH issues, who were hit with a terrifying physical illness, usually out of the blue. I don't know any MH illness that gives you shocking physical pain to the extent that you can't walk.

Give me strength.

I'm dismissive because I've had treatment for MH conditions - CBT and ssris and they made no difference (in fact the ssris landed me in hospital). No idea if having an autistic brain influenced that. Plus the fact I also have proveae physiological conditions on top which in themselves also cause fatigue.

Also how was my daughter mentally ill at 4?

Hemp = chemo

Encouraging people to take time off and lie in bed is not helpful - one of the core tennents of treatinng fibromyalgia is increasing excercise tolerance, and getting people to do more

^ That is simply not the case with ME/CFS Firelegs. With ME/CFS you should be resting to give you the best chance of recovering. You are mixing up fibromalgia and ME. Please don't give out damaging and incorrect treatment ideas when you clearly don't know about these illnesses or how they should be treated.

Anyway, I'm leaving the building now.

Good luck OP,
and anyone else dealing with this .

Given I have both ME and fibromyalgia we've discovered that pacing is best for me. Any attempt to do graded therapy leads to me passing out.

www.nhs.uk/news/lifestyle-and-exercise/exercise-and-therapy-useful-for-chronic-fatigue-syndrome/

The fact that some of the replies are in the vein of: ‘how dare you suggest I do more, I absolutley cannot excercise/function’ is my point really.

See the above article - one fo the best treatments is psychological work to unpick unhelpful thought patterns, like ‘I cannot do any excercise, it makes me ill’

Those saying ME is not compatible with employment/well paid employment....what on earth do you expect people to do??? I am a single parent to 2 kids and i have a mortgage (which is a quarter of the price of rental properties)...we would be homeless if i didnt work. There are no council houses anywhere near where i live. Plus, i am really good at my job and i enjoy it. I DONT have MH health issues. But you can be damn straight i would get them, if forced to give up work

Models of working need to change to accomodate people with disabilities. Which is what Equality and discrimination law is trying to do. We pay taxes. If disabled people didnt work the government wouldnt get those taxes AND they would have to pay benefits to keep families alive

firelegs one of the best treatments is psychological work?

Huge generalisation there ....

Still haven't heard how a 4 year old is 'mentally ill' ( age DD was when dx confirmed her CFS started)

Erm, children get mental illness too? See: CAHMS

Firelegs is just like my former rheumatologist whose helpful suggestions wound me up in hospital. Fortunately I'm now under a more understanding specialist and managing to get through my day and care for my kids. I have to pace and use a wheelchair but I even manage three hours' volunteering a week.

At 4 my daughter had no idea what depression was. I don't have it, haven't had it for 10 years.

Change the record.

Why can’t a 4 year old be ‘mentally ill’?
And why ‘mentally ill’ in quotation marks?

Why is having a mental illness such a terrible and stigmatising thing to have? It’s just an illness, like anything else. The treatments are different, but there’s no shame in having it.

Having a physical illness like cancer doesn’t make you a better and more deserving ill person than having schizophrenia.

At 4 children don’t know what ADHD is, or autism, or attachment disorder, or anxiety.

Doesn’t mean they don’t have them

I'm on the fence about the MH thing.
I think mental and physical health are closely linked and I know that my fatigue ramped up after my infection-it was systemic and involved 3 different bacteria and a virus which decided to tag on. My immune system was shot. I have never recovered properly.
I am not only tired but have muscle fatigue and achiness. I cannot think clearly.
I have longstanding serious mh issues-schizophrenia-so am happy to be labelled as mentally ill. But I don't think my fatigue is caused by depression or faulty thinking. Rather my immune system cannot repair itself. Similarly, I have had 4 sickness bugs in the last year. That is the same as I have had in all my life including childhood, previously. It is like nothing I ever experienced, and I know I won't get my health back to where it was now. But I feel lucky it isn't a serious thing (but I don't have an CFS diagnosis nor would I know how to get one-with severe mental illness they would probably not consider it anyway)

CF / ME is totally a ‘real thing’.

By MH issues are also totally a ‘real thing’ so I’m not sure why sufferers are so determined to say CF/ME is nothing to do with MH whatsoever.

Having a chronic illness that comes in waves so sometimes you’re OK and sometimes really bad is awful, and is pretty much incompatible with full time work. Which is awful in itself.

It’s a hard one to solve.

You're the one saying CFS/ME is a mental illness. Hence the quotation marks. I have no issue with mental ill health being as significant as physical ill health, I've been mentally ill seriously on 2 occasions in my life, my DH lives with depression and has done for 10 years.

Neither me or my daughter have mental ill health. We have physiological symptoms (also linked to inflammatory diagnosis in my case) which don't improve with your simplistic 'solutions'.

It's this dismissive attitude despite our life experience and medical evidence of physiological factors stated previously that utterly infuriate me about your attitude.