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’m going to log off now as partially hi jacked the thread with what is my experience as a medical professional.
I hope you manage to improve relations with your employer and good luck with recovery from your condition

I have ME and get pip fwiw

love to disclose my profession but I’m afraid it’s too outing and I quite like my username

To be honest even if you did king it wouldnt make a difference

I dont mean that rudely but we have to deal with the Doctors and consultants we have to deal with...we are told what they want to tell us. We don't have an awful lot of choice...so even if you have the answer to it all we would still have to rely on the vagaries of the NHS

@Kingkongnowrong, I don’t know what your background is, highly possible medical, but I am sorry your training or information on ME is wrong and out of date. The UK medical knowledge on ME sadly often is and incorrect information on ME is still being disseminated. The false biopsychosocial model of ME as opposed to the biomedical model has wrongly dominated for years but is now being effectively challenged. Scientific consensus at major research institutions in America, Colombia, Stanford etc have moved on from the idea ME is a behavioural condition due to the mounting pathophysiology discovered in lab research on ME patients. I suggest you do more reading of wider resources. As yet the exact pathophysiology of the disease is unknown but there are plenty of bio markers showing abnormaIties and no this is not due to the interface between the mind and the immune system/endocrine system. The flawed NICE guidelines for ‘CFS/ME’ are finally under review and will come out in 2020.

The CDC now and US 2015 Institute of Medicine (now known as the National Academics of Engineering and Science) report make clear it is a physical illness and the IOM report refers to it as a disease. Link to the report here www.ncbi.nlm.nih.gov/pubmed/25695122 The IOM report concludes:

“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.”

As I said above and which people with ME have to say until they are blue in the face I do not object to ME being described as having a mental health cause because I think having a mental health diagnosis brings with it stigma. I object to ME being portrayed as having a mental health because the research in labs and millions of patients experience world wide of their clinical symptoms make it clear that ME is a organic physical disease. Also years of behavioural treatments for people with ME such as CBT and graded exercise therapy have shown to not have worked and in the case of graded exercise made many worse which is being borne out with some research papers now showing abnormalities in the energy metabolism and on the 2nd day of CPET testing.

The PACE trial which was based on the false deconditioning theory by psychiatrists in 2011 in Britain which tested the behavioural treatments CBT to address alleged false illness beliefs and deconditioning on reanalysis show - and what patients have said for years - do not work. The bps model of ME is dead although those who promoted it for years will continue to try and argue it isn’t. If you wish to read further why the PACE trial is flawed and uses poor methodology the informative posts hosted on a virologist’s website by Public Health Researcher of Berkeley and health journalist, David Tuller, is worth reading. If you scroll down the page it takes you to all his posts under the title Trial by Error on the PACE trial www.me-pedia.org/wiki/David_Tuller

Finally further excerpts from the IOM report below:

“Some health care providers have been skeptical about the serious physiological — rather than psychological — nature of the illness”

“Seeking and receiving a diagnosis can be a frustrating process for several reasons, including scepticism of health care providers about the serious nature of ME/CFS and the misconception that it is a psychogenic illness or even a figment of the patient’s imagination. Less than one-third of medical schools include ME/CFS-specific information in the curriculum, and only 40 percent of medical textbooks include information on the disorder. ME/CFS often is seen as a diagnosis of exclusion, which also can lead to delays in diagnosis or to misdiagnosis of a psychological problem.”

““Despite Dr. Ramsay’s work and a U.K. independent report recognizing that ME is not a psychological entity (CFS/ME Working Group, 2002), the health care community generally still doubts the existence or seriousness of this disease. This perception may partly explain the relatively limited research efforts to study ME in fields other than psychiatry and psychology.”

“Finding the cause of and cure for ME/CFS may require research that enlists large numbers of patients with this disorder from which important subsets can be identified in terms of disease symptomatology, responses to physical and cognitive stressors, brain imaging, the microbiome, virology, immune function, and gene expression. Integrative approaches using systems biology may be useful in unraveling illness triggers. Studies aimed at assessing the natural history of the disease and its temporal characteristics (onset, duration, severity, recovery, and functional deficits) are essential for a better understanding of ME/CFS.”

ME/ CFS/ fibro are physical illnesses, I agree.

Sorry if my mentioning mental health made it look like I was saying they were mental health illnesses too - I wasn't, I was just responding to an earlier post questioning the definitions of 'real' illness.

Both kinds are very real. But ME/ CFS/ fibro are definitely physical conditions.

kingkong my questions were genuine .

I’m very interested in your line of thought simply because it does go against the the research evidence which has been conducted lately .

• correction to one bit above, Dr David Tuller is not a public health researcher but has a doctorate in public health in journalism and taught at Berkeley.

I’m not sure you can use your experience as a medical professional if you won’t say what that is. Particularly when it comes to CFS. The very least you could do is provide some links to the evidence that it is a mental health condition rather than something else.

OP, are you a member of a union? There’s always the employment boards on here and ACAS if you need some help with that.

Thank you @Togaandsandals. You explained it better than I did.

Mind, I'm virtually bedbound at the mo with severe cognitive dysfunction. For years. Lost my job, some friends & family & ALL my relationships. I don't recognise my life now. Too weak to have visitors.

I had a feeling you might be a HCP professional KingKong. If you are involved in ME/CFS diagnosis & treatment in any way, RE-EDUCATE YOURSELF BEFORE YOU DESTROY LIVES. People with severe ME/CFS are 6 times more likely to take their own lives & some of this is down to the lack of understanding & support from the medical world we receive.

I used to get eczema flare ups that were exacerbated by stress.

So I had a physical condition, that is pretty obvious that has a mental health component. Was the red raw weeping skin not "real" because it was due to psychological factors?

Why are CFS sufferers so determined to cling to a "biomedical" vs psychosomatic viewpoint when what goes on in the brain is known to drive biomedical changes in medical circles and also in people's lived experience?

I'm not convinced kingkong practices medicine in the UK from some of what they've said.

You can't say something is a mental illness because it's treated with low dose old style anti depressants (that's used for pain in many different conditions!). Does everyone taking gabapentin have epilepsy?

I have an undiagnosed illness. It’s a mixture of symptoms - some MS like, some fibro like. It relapses and remits over a long time cycle - the relapse will come on slowly over a week, last for months the very slowly remit over many more months. I then have a symptom free period for months or even years, before it all starts again.

Seen two neurology consultants privately. Full MRI was clear, 12 years after onset of symptoms. ANA blood test for auto immune also clear. Both neuro and ENT consultants had heard my story before and said your tests are likely to be negative - they were. They all had no doubt that it wasn’t my mental health though, they said it was “functional”.

Apparently nearly 50% of people who go to neurology with symptoms are never diagnosed with anything concrete. The consultants know somethings going on but it hasn’t yet been classified as an illness - they can’t prove it with conventional medical testing.

God knows what it is. I’ve been discharged as they don’t know. I often wonder if a cause will be discovered in my lifetime. I am just about able to work through it though so I am one of the lucky ones.

There’s no stigma attached to these conditions, but they are not a disease by any stretch and are commonly treated with low dose antidepressants (which are EXTREMELY effective).

@kingkongnowrong, I hadn’t read your latest post when I wrote my latest post above but forgive me for laughing my head off with your wildly incorrect assertion low dose anti depressants are effective for ME.

Also ME and fibro are separate conditions though people with ME can have fibro as a co morbid disorder. Also ME itself can cause nerve and muscle skeletal pain.

Also some of your wording suggests if you don’t describe to the discredited deconditioning theory of ME then you may support the non evidenced central sensitivity hypothesis of ME and other conditions. This is the new biopsychosocial kid on the block and like the deconditoining theory before it is a hypothesis and ignores ME reseach showing metabolic dysfunction and abnormal readings on day 2 of exercise CPT testing. Some of the pain may lie in the brain signals but this is far from saying the whole disease is merely due to faulty brain signals.

I have had ME for 20 years, progressively more severe and now have been bedridden 24/7 last 5 years. Antidepressants, counselling, CBT and GET do not work. I wish they did I and all other ME patients would love to not have had our lives shattered by this highly disabling disease. For decades there has been a paucity of biomedical funding for the disease which has prevented building on the small studies showing biological abnormalities. Also there have been multiple case definitions with the main ones now using far too broad criteria requiring only fatigue and one or other two vague symptoms meaning research results can’t be replicated with such mixed populations.

ME patients have been let down for decades with all state funding for years going on useles psychological research for a multisystemic disease. We have been gaslighted by medical professionals and been told we know your symptoms are real dear but they are due to no physical abnormalities ignoring any private biomedical research that has been done and challenges this false view. It’s so disheartening to read comments by people like you who I suspect is a medical professional. My hope in my lifetime is medical professionals get the correct training and education on this disease and ME is recognised for the multi systemic disease that it is. Exercise physiologist Prof Betsy Keller of Ithaca uni, USA said last year in a letter to the Lancet “it is intellectually embarrassing to still suggest that ME is a psychological illness”. Medical doctor and researcher Prof Anthony Komaroff of Harvard University said something very similar but I don’t have the quote to hand.

People with ME learn to avoid medical professionals as much as is possible because still too many of them have a flawed understanding of the disease. We simply want our reality acknowledged and to feel supported by medics and not have to be patronised with utter falsehoods about the illness. To be this ill and be wary of medical professionals is an insult on top of already debilitating disease.

Finally, here is a good round up of the biomedical research so far in ME. Many of the studies are small and we desperately need more biomedical funding to build on the current knowledge and replicate intriguing biomedical findings. medium.com/@rochellejoslyn/me-cfs-research-roundup-brief-highlights-of-biomedical-research-to-date-9249f17f291

@wijjy, I have given my views on your assertion in my posts. Flagging now but briefly it is accepted your ecezema is a physical condition. People with ME have no issue with saying stress can make their physical illness worse but the psychological component in ME plays no bigger part than it does in any other physical illness be it MS, Parkinson’s, cancer or ecezema!

wiijy CFS symptoms are also exacerbated by stress .

That doesn’t mean it’s a mental health issue.

It’s not about “clinging” to anything - it’s about finding out what causes this illness - CFS was categorised early on as a mental disorder with no “proof” whatsoever.

Now that there are indicators of “proof” that it’s a physical disease , it is absolutely right that it should be considered so .

You wouldn’t accept being told that your eczema was all in your mind - so why should CFS sufferers ?

@Absentmindedwoman, thank you, no problem and I understand what you are saying now and of course agree with you.

Just wishing you all the best re. the health and work situation OP, whether you leave or stay .

I find one of the biggest problems - apart from feeling ill itself of course, and the money and benefit issues in my case, is the lack of understanding. I do "look" ill sometimes (only those very closest to me will notice it) but mostly you can't tell. Even friends etc don't understand - or seem to want to. Its almost the unmentionable. So I rarely mention it .

I find it a particularly isolating illness for that reason.

@OneDoorCloses, sorry I wrote a reply and then lost it! Grr. I am flagging now but briefly I am sorry I have not read through all your posts but if you haven’t been ill for long my one bit of advice (should
you want it) is don’t do activity beyond your individual limits and where you get a big symptom flare. If you do this frequently you may deteriorate and become more severely affected. I know it’s hard but it may be you are not well enough to work currently. I wish you all the best.

Thank you togaandsandals

I’m a veteran sufferer of 25 years

I think the reason I can’t get better is because I’m comstantly working above my activity levels .

I have a SN child and I work (part time) as a project manager .

But over the years I have steadily declined and now I’m really struggling .

But we can’t afford my loss of income .
Although I feel that will be taken out of my hands now

Finally, I was reading a research paper form the 1940’s the other day which talked about personality types who get tuberculosis. Utterly laughable now. Also there was the time when children with autism were said to have it due to cold and unloving mothers.

Sadly the trajectory of physical illnesses being wrongly portrayed as having a large psychological component or even being wrongly described as psychological until better biomarkers are developed continues. ME and other conditions are following the same trajectory currently.

Yes it is real. I have it and it’s awful to be forced to live according to ‘what do I feel able to do today?’ instead of ‘what do I want to do today?’.

My theory is that we will eventually discover that CFS and fibromyalgia are inflammatory (auto)immune diseases. Same goes for conditions such as endometriosis.

I have been diagnosed and the disbelief is astounding from people.

The worse was from a specialist in cfs. After not knowing me she said it was psychosomatic. The worst things she said were 'it's because your dad has cancer so you are resting for him.' (she asked if anyone was ill in my family). I explained I'm not a phycopath and that I've had cfs wayyyy before my dads diagnosis. This was after half hour of meeting her.

Next session she said I'm choosing to be ill and my history of eating disorders proves that, as eds are easy illnesses to choose to have. I said it was nothing like my eds which I take responsibility for and was fully functioning ie went to uni, had a bf, had a career, ect

I could go on. It was a brain fuck.

I had it in my 20s and it's one of the reasons my career took so long to start. I will never get those years back. I'm still careful now - every now and then I get v. v. tired for no reason and I stop everything and rest.

The fatigue is impossible to explain if you haven't experienced it. I remember walking home - it was a 5 minute walk, when I was feeling bad it was 30 mins with a stop & a rest after each step. Yet I "looked" fine.

You have all my empathy OP. It sucks. and it IS real.

Oh yeah, my doctor tried to tell me it was depression back in the day. Yeah no. My muscles have no energy. They ache. Exercise makes it 100 times worse. This is not "depression" this is SOMETHING WRONG WITH MY BODY.

FFS.