Chronic Fatigue Syndrome and ME Simplified - How to Diagnose and Treat CFS | A Psychiatrist Explains

Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME) is a disabling and complex clinical condition characterised by unexplained and persistent post-exertional fatigue along with cognitive, immunological, endocrinological and autonomic dysfunction.
00:00 - Intro
01:06 - What is CFS?
05:47 - How is CFS Diagnosed?
07:33 - Canadian Consensus Criteria for CFS
11:08 - Treatment of CFS

Correction: 14:19 Graded Exercise Therapy NOT Graded Exposure Therapy. Graded exercise therapy is a term used in varying ways by different services supporting people with ME/CFS. (NICE). In this guideline, graded exercise therapy is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active. This definition of graded exercise therapy reflects the descriptions given in the evidence that was reviewed, and it is this approach that the guideline says should not be undertaken.

Correction: 14:25 Graded Exercise Therapy NOT Graded Exposure Therapy

Common symptoms include post-exertional fatigue, brain fog, dizziness (POTS), sleep disturbances, and wired fatigue, which significantly impact the quality of life.
There is an overlap of CFS with Long Covid in the context of Covid infection. Both conditions have infections as a trigger.
The pathogenesis of CFS and long covid involve abnormalities in immunological, inflammatory neuroendocrine, mitochondrial and HPA axis amongst other systems.
#longcovid #cfs #chronicfatiguesyndrome #myalgicencephalomyelitis #ME #POTS #Posturalorthostatictachycardiasyndrome #brainfog #fibromyalgia

The management of ME/CFS continues to remain a challenge in medical and psychiatric practice.  Many pathophysiological mechanisms are involved, which requires a targeted strategy targeting multiple mechanisms.

In this video, Consultant Psychiatrist Dr Sanil Rege covers everything you need to know about CFS/ME in a simplified video. Many aspects covered in this video also apply to long covid.

The following points will be covered:

• Definition

• Risk factors

• Symptoms

• Diagnosis

• Canadian Consensus Criteria

• Treatment Options:
• Lifestyle changes
• Nutritional supplements
• Psychotherapies
• Pharmacological treatments
• Complementary therapies
• Faecal microbiota transplant

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Read more in detail:

[kimberlydavis]

Chronic fatigue syndrome is terrible. You try to stay awake but once the fatigue hits you, you just cannot. Even when you sleep and rest your still exhausted. It's not funny and it's horrible. We're not lazy at all like a lot of people think. Our bodies just don't go like everyone else. Once we use our energy for the day we don't have any energy left.

[nitac.]

Has anyone noticed that your more awake towards the evening and nighttime hours?

[xxelxx]

Firstly thank you for addressing this so well, it’s rare having a doctor who doesn’t dismiss m.e. but also, things such as GET and CBT are NOT treatment options, GET has been proven to be dangerous to M.E patients even if you’re “mild” and are able to do GET at the start it can end up permanently damaging your body and CBT is not a treatment it should only be suggested as a way of coping with symptoms better not curing symptoms, this is clearly stated in the new NICE guidelines. :)

I was completely healthy until the age of 6years old when I became ill after a bout of shingles, I was admitted to hospital with an ataxic walk and mild but constant fatigue, I was there for 6 weeks, 6 weeks of hell, I was told I had munchausens syndrome and functional neurological disorder and I was forced to do intense physio 7am till 7pm, in this time I was called lazy, attention seeking and stupid and told its all in my head my parents also got told I’d start wetting the bed within a few weeks for more attention and to leave me alone till I stop faking… I left hospital, severely underweight unable to hold my head up, unable to swallow unable to walk unable to sit up in constant pain with severe fatigue, my parents then straight away admitted me to a new hospital of which i instantly got a ng tube and iv fitted the treatment was better but not great as we still had to fight for my health but I was diagnosed with cfs and the few nice drs reassured my parents it was not In my head, but they still didn’t understand the severity and just assumed it was just fatigue I was there for 6months then on and off for a couple years after.

I’m now 14, 15 in December and still have the ng tube and need a wheelchair to get around they permanently damaged my body because they blatantly and ignorantly blamed my physical illnesses on mental health disorders. something I have learnt and try to educate is that chronic fatigue syndrome is the wrong name and addresses the illness wrongly (and also has a lot of stigma attached) I call it Myalgic encephalomyelitis because chronic fatigue is ONE SYMPTOM not the illness, the fatigue can be so severe that you feel as though you have to try put all your effort into keeping your heart beating, but that’s a symptom, not the illness it’s self. I now have been diagnosed with M.E, POTS, EDS and MCAS and even though I’m only 14, I’m just surviving I do not have a life. Having m.e is like living in a body that is already dead and you’re just dragging it around, The average person with ME scores as more disabled with a lower quality of life on ‘quality of life surveys’ than those with multiple sclerosis, stroke, diabetes, lung disease, organ failure, and cancer. I don’t feel like I have anything to live for because I am so ill and I’m so much pain all the time and there is absolutely 0 true medical support. I’ve now developed depression due to being so isolated and stuck in bed all the time but I can’t admit that to medical professionals because I can’t have mental health on my record or it’ll be much harder to get support for my physical illnesses when I need it.

having ME is horrendous and I appreciate this video because it is the first video I have seen of a medical professional being so respectful and understanding of chronic illnesses, it means a lot and I wish there was more doctors like you around, thank you so much.

[louisebradburn]

The problem is, doctors, especially from my experience in the NHS, tend to use ME/CFS as a catch all diagnosis WITHOUT ruling out any other differentials. Yes, they may do a basic blood panel, then if that is negative you are labelled as having cfs, or fibromyalgia, or anxiety, or worst of all conversion disorder ; especially if you happen to be female with perhaps a history of depression. I have had viral meningitis 3 times, and during one episode I had seizures, leg paralysis and autonomic instability ; what did the doctors do? They slapped a label of FND and conversion on me BEFORE even doing an MRI of my spine or brain. I had all the symptoms of some sort of acute flaccid myelitis, yet they didn't even think to rule out any acute, potentially life threatening diagnoses before labelling me as effectively hysterical. I am still in shock to this day at the collective medical gaslighting that happened during my admission and at their refusal to listen to their patient. Their decisions were led by sheer arrogance and bias, and if you advocate for yourself or question their decisions ( any lay person would have the common sense to know if someone has a seizure and is paralysed that a scan needs to be done) this just fuels the narrative that you are 'crazy'. I have been left with severe weakness in my legs, memory loss, myoclonic jerks and symptoms of an autoimmune disease and also ptsd from medical trauma. I can't sit in front of a doctor without shaking with fear. Tell me doctor, how can we as patients trust you? How can we trust that we will be treated with respect, dignity and most of all receive the correct diagnosis and treatment when there is a culture of doctors hung up on labelling everything as psychological? Is it right that as patients we have to psyche ourselves up before talking to our doctors, that we have to censor ourselves in fear that you will not take us seriously? If we cry in your office through frustration or desperation you write in our notes ' patient was emotional and anxious'. Since when were normal, justified human reactions medicalised to mean you are hysterical or mean you are suffering from some sort of personality disorder.
It is terrifying to think that if you turn up to A&E with chest pain, for example, you will be labelled as anxious, and a cardiac cause will be missed? They say we should work in partnership with our doctors. That is bs. I have never come across a doctor who is not intimidated or put out by an informed patient who advocates for themselves.
ME is a real, devastating illness, yet how many patients are being diagnosed with this when nothing else has been ruled out? There is a whole host of diseases that could be the cause, and often times things like lupus or lyme are dismissed because the patient is seronegative, but you only have to read the journals to know that negative autoimmune panels do NOT rule out an autoimmune etiology. I once asked a doctor if I could have seronegative lupus ( I have many of the symptoms including the rash) and he looked at me like I was insane.
The long and short of it is this ; please don't assume all your patients are lying or malingering or has some deep rooted trauma that is manifesting in physical symptoms. Please don't assume we are ignorant either. Most of us have the capacity to read and research ; in fact you can never underestimate the power of a patient who is so desperate and tired of suffering to be their own detective and find the answer. Even worse for those vulnerable patients who do not have this capacity, god only knows how many are being misdiagnosed.

[susana]

Sir, thank you for posting this video!
Now I want every doctor that said nothing was wrong with me OR said it was all my head!
I want all those doctors to have ME/CFS for just ONE week and see how they would change their “opinions”…!!!

[LOLsnickersnort]

I was stricken with this syndrome in the 90’s, and am thankful I had a physician who didn’t dismiss what was happening, despite ruling out one condition after another. As horrific as Covid-19 is, I can’t help but be excited about the renewed attention and research toward CFS due to long Covid. I recovered quite a bit of my functioning, but the specter of relapse haunts me. Thank you for explaining this complex topic in an understandable way.

[skinscapetattoo]

Diagnosed in 2019 with ME. Microdosing psilocybin has helped me considerably

[JamieRoberts]

I was diagnosed with ME two years ago. I learned more about it in this video alone than from my GP. And this doctor is strikingly handsome!

[JudiHimEver]

I’ve been diagnosed by two doctors with fibromyalgia and I think CFS is in the mix. I’ve had massive fatigue (and some of the other symptoms you’ve mentioned) for two years. I did have non-symptomatic Covid in Aug 2020; diagnosed by PCR coincidentally when I was hospitalized for DKA (long Covid?). Winter of 2022 I lost 18 pounds and could barely dress in the mornings. Here’s my take: I’m DONE with doctors and lab tests and suggested treatments. The very act of chasing down a definitive dx and effective treatment can EAT YOUR LIFE up. I prefer to accept it and adapt to it. 🎉 Life is more than a diagnosis. 🎉

[Bubblesandcandyfloss]

My aunt was DX with this in the 80s after mono. I was DX with pots CFS/ME and Lupus in 2015. My aunt has since passed away. ME just wiped her out. I wish she was here to see the medical developments. Im sorry to those with long Covid. But im glad to see a renewed interest in CFS/ME. Thank you for seeing us. Its awful.

[lottiecaldwell]

I was diagnosed with CFS including POTS in 2020 after a small stroke. I went from being fit and active to being partially disabled and exhausted to the point of collapse. I AM making progress and my determination that I WILL fully recover keeps me going through the dark days. Cutting out sugar, as much stress as possible, zero alcohol and getting loads of sleep/rest definitely all help.

[marshamaxwell]

I was misdiagnosed with depression even though I insisted something was making me tired and weak. I went from having an active life to nothing. So I became depressed. I sought help and treatment for the depression and felt better with welbutrin but I was still weak and fatigued. My psychiatrist told me to go to my primary and discuss CFS because it was not a mental condition. So I did. I took all my records back to my pcp and asked for help again. I was told I was depressed!!!

My son took me to another clinic where I was diagnosed with EBV....I had it for a year. Now I take nuvigil to function daily. But all I can do is go to work. No social activities. No outings.

I'm glad more providers are recognizing this condition. Thank you for spreading awareness.

[chriseraphim]

Nice video Doc. Was pleasantly surprised watching this. In my 22 years with this illness, and being quite severe (nearly dying on multiple occasions), I've had some terrible experiences with psychiatrists in hospitals, completely not understanding MECFS and recommending dangerous outdated therapies. Was nice to see you actually do for the most part, understand what the illness really is, and that it isn't a psychosomatic condition etc. That unfortunate and outdated information and the neglect/abuse that goes with it, is still very prominent in mainstream medical circles.

So much of this is correct. Only thing I'd say is, as often mentioned in the community, that CBT and GET are often far more harmful than good. But yes you are correct in that the PHYSICAL aspects of the condition need to be improved if they possibly can be, before any increase in activity can occur. CBT is really only helpful for people to "learn how to cope" with the illness, rather than actually helping anything physically.

I've been pushed in hospitals at my worst, barely able to move, to try to 'exercise' in the rehab gym. My limbs wouldn't work and would just shake instead of functioning. The entire team started to say to each other "he's just not cooperating" and staff/dr's/psychs were getting angry and blaming me for not improving. It was truly one of the scariest things i'd ever experienced.

Internally I am one of the most positive and driven people you could ever meet (and quite a perfectionist admittedly, lol). But my body simply *cannot* keep up with the 100 project ideas I constantly have.

Thanks for the video and actually doing the research to understand this condition Dr Sanil, it's rare and very appreciated to find. Hopefully you are able to influence other medical pro's to help understand what's really going on with us.

[jacyellowtree]

“Graduated exercise therapy” has been discredited as a stand alone therapy.

[barbaragroh]

He's describing my symptoms. This is the first time I've heard descriptions of my symptoms.

[Starshine_]

Thank you. So many doctors don't take this condition seriously. I actually wish it was just a mental issue, then maybe there would be hope to get better. But I can literally feel my body broken and different functions in my body no longer working correctly. It's terrifying when it gets to be where I can literally feel like my body is dying. Whatever creates energy in the body, it's definitely not working right.

[michaelseitz]

@11:42 Removing toxic elements, like alcohol or other drugs, is good advice. Always. At the same time, these toxic elements are self-medication when everything else doesn't work. A doctor telling me to not self-medicate is a doctor telling me to suck it up and endure the pain. It is exhausting to never get any alternatives to these toxic elements. It is exhausting to always get the same advice about lifestyle changes, often ignoring that these changes might have already been tried out extensively. (This rant is not directed at you. I find your video very informative and helpful. My experience with doctors tells me that there is a significant lack of knowledge, compassion, and pragmatism in the medical field.)

[Flwer]

This is one of the best videos ive seen on chronic fatigue syndrome. Thank you very well done

[kavitadeva]

Just hearing multi pronged approach makes me feel Overwhelmed and sicker.
I have had CFS since I was 24 I got a viral infection and within one month I lost 20 lb and was what I thought dying. I have been living with this dreadful disgusting illness for 40 years. I'm 64 I've never been worse than I am now. I can barely function and I mean barely it's horrible. My complex care doctor doesn't even believe in CFS I've never had a doctor that really understands anything about it so I've just given up. I have tried so many different things to get my energy back to get the pain to go away every holistic natural thing you can think of and none of it has worked. I'm done I'm just fried cooked and over it. And at 64 I don't put much hope into doing a bunch of different things because I'm going to die soon enough. I cry all the time I have psychiatric problems I feel like I'm dead anyways but I'm not. Thank you doctor for making this video at least I know that one doctor knows about this dredded illness.

[Ann-lx]

Chemically-Induced Chronic Fatigue should be discussed. The more psychiatry and pharmacology gets involved, the sicker we get. Getting off is a separate hell.