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 ?

.I think t is primarily a mental health issue.

Do you mind if I ask why? Given that the WHO and many other countries classify it as a physical disorder.

I’m not surprised that people with CFS are dismissive of discussing mental health issues. I’d imagine it’s the same way I feel when I get fobbed off with physical stuff being put down to my mental health issues and not taken seriously.

I know.

My 3 children have autism, one has ADHD.
My daughter started showing symptoms of CFS/ME at age 4 shortly after complex cardiac surgery but oh noooo she's depressed 🙄 despite showing zero signs of it.

@Firelegs you are talking utter shit. I exercised loads before getting ill, and loved it. I walked everywhere, went to the gym, swimming, classes and worked full time. Then I started getting in from work exhausted, unable to move and it went on from there. I was certainly not afraid of exercise, I'd love nothing more than to go and do a load of exercise. My body won't let me. Not my mind. My body. You clearly understand nothing so pedal your crap elsewhere.

I've also had CBT, attended 'recovery' groups, had therapy for depression that isn't related to my illness (and I'm a big advocate for therapy for MH, it's fantastic). None of these things helped my physical illness. The only thing that has helped is to stop forcing myself to carry on and stop blooody doing so much, literslly spend my days sitting or laying down. After years of this there have been improvements and I'm now working part time, but I'm still limited by this illness and I HAVE to be sensible about it or I'll end up back where I started.

There is a subset of people claiming to have ME, some of whom have actual diagnoses, where it is part of a pattern of self-marginalisation and cultivated helplessness. I've posted on here before about a friend I have who I have really tried to support through CFS symptoms, and am at the end of my tether now.

She has suffered a major bereavement and some serious life disappointments and has been treated in the past for depression. When she had an injury that meant she couldn't do an important part of her job, her mother encouraged her to go on benefits rather than find another job, which she could have done (in-demand profession with many specialisms). Her mum actively helped her to exaggerate on the forms.

Her mum has since died and left her with nothing - literally. She has used a number of excuses not to re-engage with the world: belief that she was being discriminated against due to her sexuality, noisy Christianity that alienated people, extreme veganism that meant she couldn't be around people consuming animal products, several debilitating phobias that she no longer mentions or seems to have, and now a chronic fatigue disorder that means she is unable to interact with others apart from on her own limited terms.

I understand why people get frustrated and this sort of thing is actually really unfair to people who do have debilitating illnesses. I do understand what fatigue is - I've had an underactive thyroid for years and before I went on thyroxine, I'd sleep for up to 16 hours a day.

Have you just linked to the PACE study, firelegs?

I think that using one friend whom you say pretended to be disabled, to represent a 'subset' of people with ME is hardly robust though clanger.
Your friend's issues sound far beyond CFS and more personality disordered.

Sorry you had to put up with that. Bad enough you feel unable to go in without her guilt tripping you. I dont have the same but i do have autoimmune hypothyroidism which causes extreme fatigue, joint pain, stomach issues, brain fog etc. People cant understand why i need to nap after a 6hr shift etc, so frustrating and you try to explain but they just dont understand.

I have had episodes of ME/CFS over the last 21 years, now 38. At its worst I didn't leave the house and could only get up for a couple of hours per day to eat before staggering back to bed. At present I'm relatively well but still have low stamina, can't tolerate aerobic exercise, can get random fevers and fast pulse episodes and new symptoms that I can't seem to explain. I'm a GP. I've seen various GPs when new symptoms crop up. They're usually not that interested in looking for another cause and imply 'oh well, you've got CFS' although don't even seem interested enough to articulate this. Only 'treatment' I've been offered is CBT. I also have anxiety and can recognise the symptoms of that as different from my CFS/ME symptoms. Mindfulness and therapy helped my anxiety. I had my worst CFS/ME relapse when I was mentally pretty good and have had terrible anxiety while being not too bad from a CFS perspective. I work very part time and self employed as there is no way I could hold down a contracted job. I have had to let down practices last minute if I wake up feeling really unwell and know I'm not fit to make clinical decisions. Used to feel terribly guilty about this but now feel it's the most responsible thing to do. Several years ago I was working too much and got ill and had to meet with my supervisor because I hadn't got enough continuing professional development points logged on my appraisal portfolio. They didn't get the CFS/ME and having anxiety as well just meant that all my sickness issues were put down to having mental health problems, which although are obviously bonfide illnesses like any other physical illness, were seen by my supervisor as an inability to cope. Tried to say, er, I'd cope fine if I was well. It's a very frustrating condition which you have to learn to manage for yourself due to experience as unfortunately you will not find very many people who really do understand it properly. Especially not the looking ok but knowing that if you overdo it you will be really ill for several days afterwards part of it. That in particular makes the employment aspect very difficult. I hope you find a solution that works for you but it is hard

I was told(misdagnosed) I had CFS/ME years ago.
It took 15years to find out what the problem before I found out that I had damaged the pituitary gland following a severe head injury. I fell from a horse and damaged soft tissue around the top of my spine.

I have Hypopiutiarism including severe Adult Growth Hormone Deficiency. I also have high Cortisol levels as my body tries to compensate for the lack of Growth Hormone.
The following article was how I came to find out that this could be the cause. There is always a cause viral, bacterial, head injury, chemical exposure etc etc...
I went to the GP and asked to see an Endocrinologist...who told me that it was well documented worldwide that people who present with severe CFS symptoms are actually suffering from damage to the pituitary gland.
I had tests done and they confirmed Hypopituitarism....

www.meassociation.org.uk/2014/05/the-brain-injury-that-could-be-behind-30000-case-of-chronic-fatigue-mail-online-18-may-2014/

Yy butterfly my belief is that 'CFS' isnt a 'thing'...its just that doctors havent diagnosed the actual problem yet. I talked to my CFSME consultant and said i was thinking of going private. She said, oh yes a private doctor will keep testing and always find 'something' wrong. She said it as if it was a bad thing. But if there IS 'something' wrong to be found, then i bloody well want it found!

firelegs its ok to just come to work and not be ok???

Christ. I cant get out of bed when i am having an episode. The only other illness i have had which comes anywhere near to how debilitating it is, is malaria. It is like having flu i suppose....headaches, bodily pain, dizzy, nauseous, weakness, confusion, inability to speak. I cant stand up, let alone get to work

And yet, between episodes; i cycle 10 miles to and from work everyday, HIIT 3 times a week, horseride and i work as an engineer in an executive role

The only MH issue i have is anxiety from having a sevetely debilitating illness which effects my ability to work, take care of my kids or function at all...for which there is no treatment. Understandable wouldnt you say?

sanssherif, she's not the only one. I know of at least two other people with chronic fatigue disorders where it's been part of a pattern of self-marginalising behaviours, normally including severe phobias of things like roads or public transport and some sort of minority sexuality or gender identity that No-one Understands and everyone is getting at them for.

I also know two people with fibromyalgia diagnoses who have reacted to it as they would to another illness and tried to get better.

I believe in it. I had an oddly suspicious condition in my 30s that was similar to CFS. It went in cycles: about every three months, I'd just conk out. I couldn't get out of bed for a fortnight.

GP was convinced I had depression. I didn't, and I knew I didn't. It was only when I moved house and changed my diet that the symptoms started to lift. Then interestingly a new GP ran some blood tests on me for another reason and told me I'd had bacterial pneumonia during that time.

And I remembered when I'd once gone into the surgery and said that I was exhausted to the point I couldn't breathe well and that I felt like I was being poisoned. My GP had told me it was a mental health issue when I actually had pneumonia.

So I would not be surprised if someone with CFS/ME is actually suffering the effects of numerous diseases and conditions and then the secondary effects of living with those first effects, and the whole thing is like a net that's trapped them inside but there's no one skein to snip to free them.... Iyswim.

Well yes I'm trying to get better too, so far the graded therapy and ssris landed me in hospital and only now I'm pacing it's taken a couple of years to get back to where I was about five years ago and even do a bit of volunteering. Problem is nobody really knows the answer!

@Bleedingblood
My GP had never heard of Pituitary damage related to a head injury or seen a case in her 30years. She had only seen cases related to tumours and told me not to get my hopes up.

I went for the Endo appointment thinking it's a process of elimination and I was sure he was going to tell me to go away you're wasting your time but was I dumbfounded when he told me immediately what he was looking for!

If my GP had said no to me seeing the Endo on the NHS I would have paid private to see him!

The trouble is with the diagnostic criteria and the way they are applied. I am not a medical professional but I suspect some people have other illnesses that haven’t been correctly diagnosed. I suspect there is a CFS/ME cohort that will be formally recognised and diagnosed better based on clearer criteria hopefully (!) in the near future. I do wonder if some people have somatic symptoms. This isn’t to say they are making it up, exaggerating or faking. It’s simply that an illness in the mind has manifested itself with very real and objectively quantified physical symptoms. I used non epileptic seizures as an example. These people will seize and they are not putting it on. They are real seizures, the cause is just not epilepsy.

All that said, everyone deserves to be validated and treated
Iike an equal.

OP, you have been given some sketchy advice with regards to employment, by the way. You absolutely can have employment ended for repeated and/or prolonged illness even if related to a disability. The section on here about work is really helpful. Perhaps post on there?

Too many sufferers have been damaged by the Pace trial & GET.

I was referred to the ME & Fibromyalgia treatment centre through my GP, firstly for a full diagnosis & then to get a treatment plan to help me improve my condition. After having a 2 hour session with an Occupational therapist, I then had a telephone consultation with a doctor who confirmed that I had ME/CFS, he then made me attend 3 x 2 hour sessions on pacing that he said would improve my condition. I attended the first session, there were around 50 people, we were taken through a PowerPoint presentation showing how if I integrated pacing in my life my condition would magically get better & I would be able to lead a totally normal life. They then produced someone who gave a 30 minute talk on how she was bedbound with a diagnosis of ME & through using pacing techniques had managed to recover, was now working full time, attending a gym 5 times a week & led a full & active life. You can imagine the eye rolling, nudges & looks from the audience, we were then presented with booklets & leaflets including "homework" for the next session. At the next session there was an open discussion on what we had been taught in the first session, we were told that we could ask questions, any negativity towards pacing was immediately shut down & when I asked how I was supposed to plan & pace my day when I could have my Autistic child having a 2 hour violent meltdown, be called at any time to collect him from school as he couldn't cope or be up most of the night as my son didn't sleep, I was told "I didn't have to stay for the whole session if I didn't think I could at least attempt to follow the programme" & if anyone else felt the same we were welcome to leave, at this stage half of the group got up & left. The third session was a telephone one to one with an Occupational therapist, she opened the call by remarking that I hadn't stayed for the whole 2 hour session last time & she felt I had "closed my mind" to the concept of pacing & didn't feel that I was a suitable patient, I asked what else they could offer me & got told nothing & that I was to be discharged back to the care of my GP.

This is the total of specialist treatment I have had for ME, other that blood tests, I haven't had any other diagnostic investigations, I just feel that nobody takes this condition seriously.

nat i have attended those stupid pacing sessions. Really infuriating. Being talked to like a bunch of 5 year olds about common sense. Yes, pacing is obviously a good idea. Also totally impossible if you have kids and/or a job. The best thing about those sessions was meeting other CFSME sufferers

Yeah. That's not how I pace! That's more like the graded therapy that made me ill.
My pacing is looking at what needs to be achieved in a day, looking at ways to help me do it (ie use wheelchair if necessary) and delegate/reschedule anything remaining.

Don't always achieve it though if for eg I get called in to kids' school. Have to prioritise.

Sorry you feel so crap op.

In a sense it’s irrelevant whether it’s ‘real’ or not.
If any illness causes you to be unable to fulfill your work commitments they can’t really keep your job open can they ?

I am beginning to think I may have ME and I am so afraid.

Firelegs. You make me deeply sad at your views and you work with sufferers. It doesn't surprise me.

Please I beg you change your opinion and stay up to date with the most current research and studies.

I used to be heavily into excersise and social. It is NOT always a negative attitude. Unfortunately being positive doesn't change your body.

Please come at it from a perspective that by the time they are seeing you they probably have tried many many times to push themselves and that's how they know their limits.

Why o why are people who have no interest in furthering progression into real research working with people with ME.

Butterfly. Would that show on a brain scan?

A brain scan and/or blood tests for certain hormones will be indicative of pituitary provlems.

I recently had a brain MRI of the pituitary to check for problems (normal).

Thanks for info 9am