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 there are a few different diseases that end up being called CFS / ME. In terms of causes and treatment, it's about as useful as the label "rash"; there are a few similarities but also many differences. If you compare people post-glandular fever with those with endocrine issues, the cause differs and it's most likely that the treatment should too. I think the more refined classifications would really help, because otherwise treatments can't be effectively trialled.

Anyway, that aside, your manager clearly doesn't understand the nature of the illness and the nature of your role means that absences are causing them real management issues too. I'm presuming you've had doctor notes submitted you explain your illness to HR in the past. If you do it nicely, it could be quite positive to ask HR to explain the effects of the disease to your manager and help you both come up with a more effective way of working around your illness. I'm sorry you aren't getting the support you need, it's a particularly tough illness to manage alongside work.

Can anyone post any links to any recent research? Has anyone tried anything recently as a result of this research thats worked / hasn't worked? I kind of gave up keeping up with it all a few years ago as I'd get all excited that I'd be able to try something new and it wouldn't work and then I'd be disappointed (supplements etc)

Thank you

I hope work gets better for you OP. It's horrible when the stress of work adds to how you're feeling. I know for me when I'm off work it's just an extra layer of shitness and the unknown (how long I'm going to be off for, what I'll be able to manage when I'm back, how my bosses and colleagues will react ) is horrible.

Thanks for starting this discussion @OneDoorCloses. It’s always good to hear that you’re not alone.

I’ve also just completed the CBT sessions at my CFS clinic which were helpful in dealing with some of the stresses caused after being diagnosed but it has not in anyway been a cure! Managing the condition as best as possible and watching out for certain known triggers such as over exertion or catching a viral/ bacterial infection which exacerbates the condition even more is the best I can do right now it seems.

Keeping activity low level seems to help but difficult to maintain with a busy schedule at times so I’ve just tried to accept that there will be certain periods of severe fatigue following higher activity and to try and work around it as best as possible.

The clinic have also offered the graded exercise with a physiotherapist so I’m waiting to hear back for referral. I’m up for giving it a try but not wholly convinced yet of it’s effectiveness!

AmIRight - Here’s a link to a news story from 2 weeks ago about research which has shown impaired transmission of calcium ions into the cells:

www.abc.net.au/triplej/programs/hack/breakthrough-in-diagnosis-of-chronic-fatigue-syndrome/10188210

This makes my blood boil because it is a physical illness. I was virtually housebound from 21 to 28 due to ME/CFS. My parents paid for me to go to the National M.E Centre in Essex and following their programme and having regular vitamin B injections I managed to be able to get well enough o take a part time job. It was mornings only so fitted in well with my graded activity programme. My job sharer then left and I managed to take on my job full time. Slowly slowly I cut back on my rest periods.

I'm now 42 and have got married, been to New York twice, Mauritius and Singapore and Malaysia - something unthinkable when I was so ill. I also have a 3 and a half year old little boy.

I still have to go careful with what I do and my family are supportive but I never thought I would get my life back in the way that I have. It was a long and hard struggle though.x

I have it. I do think that not everyone diagnosed has it and it's other illnesses that they don't know about or haven't bothered to investigate properly. It's used as an umbrella term to lump everyone under when the standard tests come back clear I think.

I have not read any further comments past page 7 so sorry if I have missed anything.

@OneDoorCloses, i am sorry to hear you have had the illness for many years and that you are deteriorating. I know the prospect of being too ill to work and the financial implications are a difficult prospect to face. As I am sure you know there are sickness and disability benefits, ESA and PIP. I know though the application process is not easy, and the PIP criteria have been made narrower so those who are sick and disabled but not with very high needs get less than the old DLA which PIP replaced. I do wish you all the best.

@yunalis above said kingkong may not be working in the UK, that may be I don’t know, but I also wouldn’t be surprised if they are UK based as their inaccurate views on the illness are sadly not uncommon amongst the medical profession here in the UK and many other countries. Although the biomedical research showing physical abnormalities is building more and more (and there has been some for decades) this biomedical research is still not filtering down to med professionals. Also med and nursing schools are still not getting correct education on the illness where it’s either barely mentioned in the med school curriculum or if it is still often wrongly portrayed as a predominantly mental health condition. This must change and what advocates are calling for.

@mascarponeandwine, unfortunately functional is the euphemistic term used by neurologists for psychosomatic. Obviously I don’t know what you have but I can share standard mri doesn’t pick up abnormalities in brains of people with ME. Research settings specialist fmri machines are doing so. Some people with ME, not many, but some have a relapsing and remitting pattern like you describe. Despite ME being listed as a neurological disorder by WHO, surveys have shown the majority of neurologists wrongly believe ME is psychosomatic. Possible because diagnostics such as standard MRI’s are not picking up the abnormalities. SPECT scans in research studies (small studies as not enough money to do larger ones) have shown hypoperfusion (low blood volume and circulation in t in the brains of people with ME and specialised MRI scans are picking up abnormalities. Link here about one brain study www.meresearch.org.uk/news/brain-abnormalities-in-mecfs/

@AmIRightOrAMeringue Not research but I've been looking into B12 deficiency recently and come across at least a few people saying their CFS or MS symptoms were actually helped massively by supplementing with B12 - Sure I've seen at least one person reporting they were misdiagnosed and all their issues were purely down to this.

Obviously it's not a miracle cure for most but worth looking into as a possible additional factor to things?

Hopefully not coming across as a "Have you tried X?" wanker lol - just sharing what I've come across on my Google-travels, I do appreciate the whole range of CFS/ME/MS/fibro etc illnesses are very complicated, as this thread alone proves

@doublehelix, the neurologist Suzanne O Sullivan’s chapter on ME in her book ‘All in Your Head’ was terrible. She completely ignored the biomedical research studies on ME showing biological abnormalities and which are being discovered more and more in the last few years. She was widely criticised by doctors knowledgable on ME and well informed patients but she ignored this justified criticism on her ME chapter. Her chapter on ME and dismissal of the justified criticism was very irresponsible of her. Also as I have said previously behavioural treatments on ME have shown in studies to not work, especially the terrible £5 million UK PACE study, although the trial investigators refuse to acknowledge this. A good critique in the following link of the flaws in the PACE study that looked at behavioural treatments for the illness. www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

I also think her hypothesis of psychosomatic illness generally is that - an hypothesis with no evidence. The quality of her work on the ME chapter means I have no trust in her theories.

Also note psychosomatic is another word for what was known as hysteria up until the mid 20th century. There was no proof of hysteria then, indeed many diagnosed with hysteria then would today be diagnosed with a recognised physical condition that was yet to be understood or discovered at that time. Yet this doesn’t stop even today medical professionals like O’Sullivan touting books on it now with the label psychosomatic. It’s still popular too amongst other medical professionals, mainly from psychiatry, who are trying to push the model across the NHS under the term Medically Unexplained Symptoms (MUS) or functional disorders. The NHS bean counters are receptive to the model as in the short term it saves money slapping such a diagnosis on a patient where routine tests don’t show anything or there has been insufficient testing. Medical knowledge hasn’t reached a pinnacle where all there is to know has now been discovered.

*Zoomzoom I’ve not heard that about cancer but it’s interesting .

I think most people will agree that stress exacerbates ME symptoms , but it’s not known to be rooted as the cause of it. If it were the cause, then CBT / counselling etc would help , but a lot of ME sufferers and the results of a recent trial show it doesn’t work*

I'm not following your logic here. I think it's pretty accepted that persistently high stress levels can lower the immune system and impede its ability to fight/elminate cancer-causing cells that otherwise it would naturally be able to tackle. 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. So, just because CBT/counselling has been shown to not help ME sufferers doesn't mean that stress is not a causal factor of it occuring in the first place.

@CuriousaboutSamphire I have ME/CFS and I get full PIP. I'm far from bedridden???

I’ll be honest: no I don’t believe it is an illness in and of itself. I think there is a psychological component to it and that sufferers honestly feel unwell but I don’t think it is a purely physical condition. I would never, ever venture this opinion IRL though or treat sufferers in any way other than with compassion. My sister suffered from it for years as a teen.

@Imamouseduh, Firstly, teenagers seem to have the best prognosis and though not all teenagers make a full recovery they have a higher incidence of recovery than adults. Full recovery in adults is rare, especially after the first few years. Some adults remain severely disabled long term, others with time improve to varying degrees.

Note the Institute of Medicine in the USA in 2015 commissioned by the USA health agency, HHS, did a report on the illness and concluded:

“It is clear from the evidence compiled by the committee that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.”

I have written earlier in this thread in further detail, most of which is in replies to Kingkong (an ill informed medical professional on ME which is not uncommon with this illness), why views like yours that ME has a large psychological comment is false and inaccurate. Too ill to write it all again. It’s there should you be open to reading it. To sum up it has no more psychologicsl component than any other physical diseasex such as MS, Parkinsons or cancer.

I should add this is not to minimise mental health conditions which are also serious and in due course, as @absentmindedwoman said, will probably also have a biological basis, which they are starting to find indicators of already.

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. So, just because CBT/counselling has been shown to not help ME sufferers doesn't mean that stress is not a causal factor of it occuring in the first place.

@imamouseduh, my comment was in response to a previous comment where they said they didn’t understand why people with ME get frustrated with the frequent assertion (which you made yourself too earlier in the thread) that ME has a large psychological component, with the implication more so than other physical illnesses. I was pointing out it has no more psychological component than any other physical illness. As for the causes of ME research has yet to establish that so who knows what different factors were in play to cause ME.

@togaandsandals thank you. thinking back it was the two gp’s I saw who termed this as functional. The neuros and ent consultants didn’t mention functional, just concluded they didn’t know what it was.

I find it most odd that an arguably clever and educated profession can put blatant physical symptoms down as caused by poor mental health. My mental health is fine, my balance when struck by an episode of disequilibrium makes me feel like I’ve just got off the waltzers. I can tell there’s something physical in my head that’s causing it. I think the inner ear is also affected, though this wouldn’t account for the pins and needles in my feet. The hearing and balance testing ent did had perfect results so nothing can be proved.

@KingKongNoWrong, I see since I wrote my last comment to you confirmed you are a medical professional. You said you are leaving this thread. Should you come back and read this thread, please note the the Institute of Medicine report on ME in the USA in 2015 which I referenced earlier was commissioned and accepted by the USA health agency, HHS. (The Institute of Medicine has recently been changed to the National Academy of Science, Engineering and Medicine.) I would read the 1986 Ramsey criteria of ME or the 2011 ICC ME criteria to get a proper idea of the symptoms of ME which are NOT as you wrongly characterise merely aches, pain and chronic fatigue (people with ME don’t have standard medical fatigue either, the exertion problems in ME are v distinctive).

I and many others with ME are so frustrated that some med professionals still do not understand what the cardinal symptoms of ME are. The IOM report made some good observations, although the criteria they came up for ME and re named SEID, systemic exertion intolerance disease are not adequate and missed important symptoms. ICC are better.

One of my friends has ME I have MS and we share a lot of similar symptoms. I absolutely believe it exists I don’t understand why anyone would even question it and really makes me angry. What myself and my friend have discovered is we seem to have bad days at same time and some of the symptoms we share will flare up at the same time. It’s not all the time like clockwork but we are both convinced that it must be something environmental that triggers these joint relapses.

I was diagnosed with Fibromyalgia nearly 15 years ago & with ME/CFS 5 years ago, I had to give up work 8 years ago through a combination of Fibromyalgia, Depression & Endometriosis. I've spent the majority of the last 18 months in bed for at least 16 hours a day as my pain & energy levels have been so bad. It took nearly 3 years of seeing a Rheumatologist before my Fibromyalgia was diagnosed, I had been in severe pain in all my joints, had constant low grade infections, persistent tiredness, horrific mood swings, my short term memory was terrible, I couldn't take in training at work, my memory just wouldn't retain the information, every day I felt as if I was wading through mud, I used to get home from work & collapse, I woke up every morning feeling like I hadn't been to sleep even though most nights I had slept at least 12 hours, I could hardly walk, even the smallest task felt like climbing a mountain.

I'm on a combination of anti depressants, painkillers & epilepsy drugs to manage the pain, on a good day I feel like I'm recovering from a bad dose of flu, on a bad day I have to lie down in a darkened room with ear plugs in as light & noise make me feel worse, even wearing clothes causes me pain, I can no longer wear a bra as the pain is intolerable, I mainly live in pyjamas, if I have to go out, I have to wear very light & very soft loose clothing as anything else causes terrible pain & discomfort. I can't get in & out of the bath, the effort of having a shower or washing my hair leaves me wiped out for days, just getting up to go to the toilet feels like a major expedition. I find even the simplest things like talking to someone tires me out, I can't think properly, the brain fog is horrific, I used to have a really good memory, now it's an effort to remember what day it is.

I don't have any form of social life, most of my friends have drifted away, I rarely go out, just the effort of a phone call wipes me out. This disease has robbed me of my life, someone once said to me "At least you haven't got cancer" Cancer is at least in the main treatable & acknowledged, ME/CFS treatment is rubbish, I could go to my doctor with my leg hanging off, but would still be told "it's probably your ME/CFS" there is no defined treatment, everything is try this & see if it works. Fibromyalgia does at least come under the disability discrimination act & employers do have to make reasonable allowances for anyone who suffers from it.

It's time there was more research in treatment & management for sufferers. Pacing & Graded exercise therapy have been proved to make patients worse & telling anyone that this condition is all in their mind is frankly barbaric.

@marciebluebell and @version2point0, one of the problems with this illness is there are many different case definitions for ME and CFS with some CFS case definitions only requiring fatigue. This has caused different conditions being wrongly conflated with patients who meet the stricter ME case definitions. It’s an almighty mess. This means some people are being misdiagnosed of ME. One study in Newcastle found 46% were wrongly diagnosed with ME. Some people with a CFS or ME/CFS diagnosis will have ME but not all. I have no idea what your friends have, not knowing their case history or symptoms.

I will say it is known that ME often disrupts the body clock causing sleep reversal where the person can’t get to sleep until very late and obviously wakes later. Attempts to shift the body clock back to normal can cause deterioration so patients learn to go with it. Melatonin can sometimes help. Symptoms can also be a bit better later in the day. In my first few years of ME when I was still only moderately effected and could socialise a little with friends I got sleep reversal. So I would feel lousy all day and then be a bit better in the evening. I know some well friends struggled with seeing me the last one up if I stayed with them.

@mascarponeandwine, thank you for explaining it actually wasn’t your neurologists who used the term functional. I agree it’s ridiculous how some med professionals glibly dole out mental health diagnoses for physical health conditions.

Reading this thread with interest so I can learn. I know a couple of people with diagnosed FM/CFS and it's been tricky to understand the effect it has on them. Both are on anti-depressants already and tend to be very dramatic and need a lot of validation and attention day to day. Those close to them can feel drained with all the drama and they have a tendency to take advantage of friends and family in a way I personally don't agree with having been on the receiving end of it.

But this may well be two exceptions and who's to say this behaviour isn't the direct result of these conditions. It just feels like they find life harder to cope with in all ways and the way they communicate that (e.g. endless "my pain inside and out but I survive") type memes on FB probably has the opposite effect of helping others understand what they're feeling.

This sounds awful but I thought it was bollocks until I met someone 'credible' with it.
I initially put it down to something depressed women whine about.
I think people don't ask how you are because they don't want to indulge the moaning tbh.
People, including HCPs I know, including nurses and a paramedic, say it has no basis and there is nothing wrong with them.
I must say I completely believe in both fibro and ME/CFS but only because I've seen how struck down a close friend has been and she was formerly high functioning. Also the health limitations I now have after a few years of high stress and some bad infections.
Previously I thought sufferers were 'sensitive' and those who are always ill, but have nothing wrong with them.
Sorry you are experiencing this.

It's incredibly unfair to conflate drama and attention seeking with these conditions. That is the way your friends are, not their diagnosed conditions. On the whole people I know and myself go through life putting on a brave face as far as possible, if people ask how I am I always answer "not bad" as if I was truthful I'd bore them to sleep.

I did go to a support group with my friend and was struck by how competitive the women seemed to be though. Who had it worst. Almost martyrlike. I think that support groups can have the opposite effect in some situations. People should be eligible for individual support focusing on their own circumstances and what they can do.
I have also heard people link fibro to MS, which is nothing like fibro, and does nothing to add credit to the fibro suffering, rather it diminishes it.
Not sure what could happen to improve its profile though.

Look into the 'Equality Act 2010' OP as if you've had ME for more than six months it is officially a disability and your workplace need to make reasonable adjustments. I think lawfully they should not be putting you on a red warning for situations relating to your disability either.