Can you help the doctors of the future understand ME?
What should medical students learn about ME?
Email Dr Nina Muirhead nina.muirhead@nhs.net with a list of what you think medical students should learn about the condition.
Nina has already sent a questionnaire to UK medical schools and would like to compare what is actually being taught, to what patients think should be taught, so she can campaign for better medical education.
Be aware that the amount of time available to spend on individual conditions in a medical course is very small, so select the key topics.
Dr Muirhead is a Dermatology surgeon in Buckinghamshire, a tutor & research supervisor at Cardiff University Medical school and a person with ME.
Fatigue is NOT of a ‘normal’ type and doesn’t improve with normal rest. Multiple symptoms often build up What [physically and mentally] you do over one day or several days can affect you a few hours or days after and are long lasting and reduces capacity further often for long periods.There is rarely any recovery just fluctuations in severity which can be unpredictable and variable. Normal ‘activity’ is unsustainable the more you do the worse the symptoms and more lasting. Symptoms are NEVER improved by forced exercise beyond your limits this can cause severe relapse especially if done regularly and this is very hard to reverse and can lead to an even lower level of capacity or even to permanent disability. Activity is hard to maintain so pacing is Vital with good quality rest. Most sufferers have OI [orthostatic intolerance] which is a blood pressure problem and affects ability to stay standing up with dizziness and feeling faint coming on very quickly. A Normal lifestyle is hard to maintain as energy is limited and poor and ‘activity’ is restricted. There are many levels and variabilities to the illness and many symptoms also many triggered secondary ailments due to compromised immune system and stress on all systems due to total lack of energy for proper function. Fatigue affects cognitive function as well as physical function with poor concentration, following direction and maths skills among them. Ability to access any help for benefits, aids and practical help,understanding from any quarter is totally lacking so many sufferers are left to fend for themselves to try to find their own way which is a minefield of miss-information and inaccuracies compounded by studies like the Pace trial and Nice guidelines that advocate the things that actually makes us worse yet it is STILL pushed down our throats at every opportunity it seems and gives ppl the wrong impression of this illness which is hard to explain how wrong they are. The propensity to advocate exercise for almost every ailment seems to be the go to therapy when nothing else is available or to cover complete lack of knowledge of the illness. I could go on and on as there is so much wrong and inadequate about the systems that are lacking for a large group of ppl who really need help but are ignored and are not in a position to fight. I have suffered and struggled for 25 years and am mostly housebound. I have been to hell and back many times with very little help from anyone.
All good stuff, thanks. I will pass that on. Jan
Just to add that you can have OI without necessarily feeling dizzy or faint. I relapse badly after standing longer than a very few secs. I have stood a few secs too long when concentrating on seeing fuse box in power cut and didnt feel dizzy but did relapse next day.
I dont like the fatigue word as you feel ill, not just ‘tired’. I wish crashed or another word (depleted?) could become an accepted term to use instead of fatigued.
We have a daily ration of energy, that varies depending on how well we have paced in preceding days. And that energy is the sum total of all physical, emotional and cognitive energy, social interaction, and external stimuli to the senses. So must pace accordingly and constantly choose between them.
The range of OI experiences experienced by pwme is definitely more varied than simply full blown POTS. The F word is a ‘B’ isn’t it! Maybe we need to classify fatigue by cause e.g. Fatigue from Iron Deficiency (FfID); Fatigue from Underactive Thyroid (FfUT); Fatigue from overdose of Glucose (FfOG); and for ME??? LOL
Every process undertaken takes energy in the extreme and can lead quite quickly to a state where we can’t function. Listening to, or taking part in a conversation, especially if there are other voices either in the background or talking over each other can be very debilitating. Our ability to process incoming words is severely affected, to the point where the words mean absolutely nothing and turn our heads into a block of concrete.
Light also has a draining effect and with basically all things draining our poor energy very quickly, we must prioritise what we can or have to do in a given period. Sometimes it’s a choice between showering and dressing or having the strength to make something to eat.
Well said. Thanks. I will pass that on. Jan
The exhausting fatigue and lack of understanding by everyone ! Along with an unsympathic attitude and a lack of follow up support!
Even when some evidence is present, tgere remains a negative attitude by consulrants
That negative attitude needs to change! Thanks. I will pass that on. Jan
1. Believe the patient ‘s symptoms are real, not imagined, and have a physical pathology
2. Treat the patient with respect and dignity
3. If you, the doctor, doesn’t know what to do….admit it without trying to make the patient feel to blame
4. Read Dr Myhill’s book “Diagnosis and Treatment of CFS and ME”
5. Absolutely refrain from jumping on the biosychosocial bandwagon. It helps no one, wastes time and money and causes real, lasting harm.
6. Treat symptoms and comorbidities as they arise
7. Remember….first do not harm!
To the point Tess. You don’t have to understand or believe to treat someone with respect and dignity. It is the very least we should expect. I will pass this on. Jan
Excellent points. I like this list.
First & foremost. It’s real! We were & want to be active. The “fatigue” is like esthenia, consuming, debilitating, feels like a collapsing rag doll. The pain is not just aching muscles, it’s like a full body migraine, bone chilling or bones on fire. The mind just quits, light, sound, trying to speak actually hurts. Reading & comprehension blur to zero. Follow these symptoms to their logical physical sources, please. Listen to your patients & consult the experts like Dr.Myhill or Nancy Klimas in the US. There is so much information out there. You will see that it’s complex, but not impossible to manage.
I had to look up the meaning of a/esthenia – abnormal physical weakness or lack of energy! Thanks Alice, I will pass this on. Jan
Lack understanding and talking fast can’t keep up what being said because of your brain fog.
Sometimes can see on there faces they don’t want you there
Telling them take blood or do obbs on your paralysed arm has
other arm so touch sensitive not to turn light on burns your eyes because light sensitive.
Worst not being listen to how you feel
Jade
Brain fog and sensitivities make consultations a nightmare for many, so well said. Thanks, I will pass this on. Jan
PEM is not just subjective, it can be tested. Send the patient to a 2-day Cardiopulmonary Exercise Testing (CPET) before you recommend training, because training has a negative efect in ME patients.
I think I might be too nervous to risk CPET, but a heart rate monitor would be less harmful. Thanks, I will pass this on. Jan
Find out how long the patient has been suffering from unusual exhaustion
Ask if they see a pattern with exertion and exhaustion, looking for post exertional malaise.
Take bloods to check for VitD levels, as well as usual tests that are likely to be done.
Encourage patients to rest as much as possible, cut out all inessential exercise for a short while, say, until next appt, and point towards pacing techniques. It’s better to rest unnecessarily than exercise when you shouldn’t.
Ask patients to make a brief diary of their day – activity/ pain/ exhaustion/ mental acuity/ sleep levels until next appt.
I echo the need for respect and dignity. it ought to be the least we expect, but we rarely get it.
I agree. Knowing enough to ask about the post exertional response is a key requirement of a GP. Even if a patient hasn’t noticed it up until that stage, it can be useful for them to know to look out for it. Thanks, I will pass this on. Jan
I would have liked to known the limits of the doctors role. Early in the condition,especially after diagnosis it’s terrifying. We’re very vulnerable and grieving the loss of ourselves. It would have been helpful for the Dr to advise a councillor for the grief, stress management and any underlying trauma. Not just CBT, talking therapies. Also it would have been nice to know that recovery even partial is possible, because I and many others get close to or actually comit suicide, because without a light at the tunnel there’s no point. Also a referral to a nutritionist/dietitian to maximise nutrition and one to occupational therapy to help with daily living difficulties.
Doctors have to believe we have a serious condition before they are prepared to refer to therapists, so this is a good point. Thanks, I will pass this on, Jan
When you meet someone with ME it’s likely they have been self managing the condition for a long time even if they have reciently been diagnosed. Diagnosis takes a long time.
They are the expert in their own body and symptoms.
Of course there are some pwme who are also hypercondriacts but like most people with chronic non curable conditions a visit to a medical person is a last resort.
Listen to the person and don’t just blame everything on the ME. We are also allowed to have multiple conditions likebana every other person in society.
Don’t ever be ashamed to say “I don’t know” or “medicine doesn’t yet have answers for you” . This applies to many chronic uncunable conditions. Noone expects a doctor to know everything and we have much more respect for someone who acknowledges boundaries and does talk rubbish.
The best thing about doctor ever did for me at my worst with ME is give me a hug and say to me “I really wish I had answers , you look really unwell and I can see you are trying so hard and I feel so bad because I don’t have magic answers” I didn’t expect a cure I just needed to know I was doing my best at that point and the labels like lazy and hypercondriact were unnecessary and hurtful
Very understanding of the doctor’s difficulties. I will pass this on to Dr Muirhead, Thanks, Jan
Ebv early antigen, killer cell activity tests, hhv6,
Dr Muirhead will know what you mean, thanks.
I asked for one of my GPS to test my natural killer cells . She says l wasn’t Sick enough and didn’t know how to do it . I’m guessing this Doctor is in her early sixties .. and I had rested positive for EBV
Respect that ME is real , we are suffering, and don’t blame us for it.
Don’t call us crazy if we cry. We are desperate for help and it’s hard losing the person you once were.
LDN is our friend.
Know that our bodies break down when we use energy. We can not push ourselves too far. Exercise won’t make it go away.
Watch Unrest and share it with everyone you know.
We need your help.
Understanding the level of suffering experienced when there are no NHS tests to prove it requires listening to the patient’s experience, not just a list of symptoms. Thanks, I will pass this on. Jan
I care for my son who has ME – some understanding and compassion for carers would make a big difference. This disease affects a whole family. Services available to housebound adults are often not available to sick children eg district nursing, phlebotomy and home visits from GPs. It would help if GPs understood that children can be housebound too.
Interesting comment. Many families find less care is available for adults. Transitioning to adult services can often be a big shock. District nursing and home visits can be hard to access. A good paediatrician can often make up for that. It is often down to the understanding and compassion of an individual however health professional. The impact on the family is often overlooked, especially if a parent sounds competent. Thanks, I will pass this on, Jan
Deconditioning as a cause ofme/CFS fatigue is absolute nonsense. I was super sporty when I got I’ll and continued trying to play rugby and go to the gym. The fatigue and flu like symptoms began while I tried to carry on playing sport. I was in no way deconditioned and never had a period of illness in bed. I gradually became more and more ill and had to stop sport. My health worsened until I was struggling to walk and wash myself and even speak. This was due to the illness not deconditioning!
The danger of assuming the existence of deconditioning is an essential lesson for GPs to learn. Thanks, I will pass this on. Jan
A gp that didn’t know me who spoke to my mum when requesting a home visit was really shocked that I had been bed bound for 2 years and was not being visited by district nurses for bed sores etc. My mum said she doesn’t have any bed sores. Strangely she was more fixated on that in first instance. Nothing with me follows usual medical rules so you almost need to forget everything that happens to sick people without me
I’ve had ME / CFS FIBRO for going on 13 years … I’m sure early diagnosis and treatment is crucial. I pushed on through for years . Done so much damage. I’ve lost so much to this disease . My pride dignity and independence and so much more. I’m getting worse pretty rapidly. Proper guidance and care need to be put in place before more damage is done . Doctors need to listen to patients..!!
It used to be that the advice was to diagnosis once 6 months had passed. There is more pressure these days to give a provisional diagnosis earlier. This would be much more helpful to people like you Lorraine. I will pass this on to Dr Muirhead. Thanks, Jan
Thank you . I waited 3years . Only to be given advise to push through. Go back to work … Exercise .. keep going .if I had rested and not pushed through for year’s I don’t think I would be as bad as I am today . Many thanks .
To look at the bio-medical infomation, that it is a neurological illness that can effects ever cell and system in the body. How to diagnose (spot the signs) that someone as ME. The differance between an health person feeling fatigue and someone with ME who has post-exertional malaise. Look at both the phyical and cognative problems expearianced with ME. The differant levels of ME mild, moderate and severe, and what they mean. The sensory over load and hyper senativity that happens more in moderate and severe cases. What treatments are avalable and how well do they work for the differnt levels of the condition. Sorry I know that is already quite a lot for students to take be give in such a small space of time, and I’m sure I could go on with other important acpects for them to cover as in is far from a straight forward illness, and the miss information out there about ME does not help, but for me, what I have mentioned above are good starting blocks for medical student and hopefully will help give a better understanding of ME.
You’ve hit on one of the problems Stephanie. So few people have any accurate knowledge about ME that there is SO much for them to learn. Hopefully Dr Muirhead will find a consensus on the key lessons that will open students’ eyes. Thanks. I will pass on your comments. Jan
If Dr Myhill’s Mitochondrial energy score test was adopted, earlier diagnosis and help would be possible without the potential damage of the 2 day CPet test. You can’t fake that blood test.
Train doctors more thoroughly in areas concerning the adrenals and thyroid, go beyond the basic THS test.
Get early referrals to OTs etc and introduce meaningful physio based on Dr Nancy Klimas’s program – used in conjunction with a heart monitor.
Get early diagnosis and treatment for POTS.
Assessing levels of energy, pain etc. every so often and taking simple blood tests could be a good way of checking the signs of ME. Thanks. I will pass this on. Jan
Use the International Consensus Primer and the Canadian Consensus Criteria documents to work out the best way forward for patients. They cover medication and management strategies.
For Severe ME eg paralysis, eating problems look at the 25% Group website, Hummingbirds’ Foundation for ME and Stonebird.
It is vital to understand that
– this disease kills
– the current NICE guidelines have killed people with ME
– exercise or activity causes ME patients to have the exact opposite reaction to healthy patients
– early rest is the best predictor of improving and the best way to avoid patients becoming severe
– orthostatic intolerance means some people cannot sit right
– ME patients die about 10 years earlier than the general population
– UK patients have raised over £900,000 to find biomedical research while trying to avoid being harmed by those following the baseless assumptions of the biopsychosocial “model”
A good reminder of just how serious ME and treatments can be for ME people. Thanks. I will pass this on. Jan
Watch Voices from the shadows too.
Suggest ask keep a diary of main activities and including times standing still and note how feel too so can see what if anything causes pem. That was how I identified probs with OI
I have emailed information created by the North Carolina & Ohio ME/FM Support group for doctors treating ME.
Here is the link to that information.
https://www.facebook.com/notes/north-carolina-ohio-mefm-support-group/basics-for-treating-me/1828276693906886/
Here is copy of the information:
What should be in Medical Textbooks Based on Expert and Patient Experience
PDF version: https://drive.google.com/file/d/1dhWcEi1d9NFDPMs7TtnW96TrBytKgjR-/view
NOTE: If you feel this information is useful – please sign this #PwME4ICC petition so that doctors will be given this kind of information from government health agencies – https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now
FIRST – DO NO HARM – or in the case of ME patients – Do as little harm as possible while trying to help the patients improve quality of life.
MYALGIC ENCEPHALOMYLITIS (ME) is not a diagnosis to be given lightly. ME patients suffer a living death that is life changing and, in most cases, lifelong. These patients will need to avoid many activities a normal person would undertake. Due to the severe nature of the disease they will have to reduce or avoid interaction that is overstimulating which may include interaction with people. The progression of the disease is not well understood but a significant percentage may become so ill as to require a caregiver to meet daily needs and a subgroup may require 24/7 care and tube feeding.
PRIORITY for any doctor treating an ME patient is having a good understanding of those things that will exacerbate the illness in order to be part of the solution and not part of the problem.
“The crucial differentiation between ME and other forms of postviral fatigue syndrome lies in the striking variability of the symptoms not only in the course of a day but often within the hour. This variability of the intensity of symptoms is not found in post viral fatigue states.” Dr. Melvin Ramsay
Goal is to maximize patient’s ability to participate while preventing permanent deterioration into a severe state of suffering.
If you suspect your patient has ME or you have someone who has been previously diagnosed with ME, it is important to rule out often missed issues in order to begin proper treatment. See the following documents for details:
Testing and Conditions to rule out: https://drive.google.com/file/d/14G8USQgupDBsINhCGAxKNl7CD176oWNt/view
An ME patient’s physical capabilities will present inaccurately during doctor visits. This is across the board for ME patients at any level of the illness. This is because patients use stored energy and borrowed energy in order to maximize their time for any outing. The disease manifests its worst symptoms 2 to 4 days AFTER the patients have done an outing. This “crash” is one of the best indicators that a patient has been properly diagnosed with ME.
This crash after activity is one reason patients stop engaging with their physicians. A physician may think they have resolved a case of ME because the patient stops coming or stops mentioning the disease. Patients stop coming or stop mentioning the disease when the effort exacerbates the illness and the treatments offered exacerbate or have no impact on their quality of life.
If all other causes have been ruled out and the patient fits the International Consensus Criteria, specialists care is recommended. As the backlog for patients to see a specialist in ME is often longer than a year, it is necessary for GPs to look to information from the experts in order to begin treatments as soon as possible to improve quality of life.
See Cheat Sheet for treating patients based on the International Consensus Primer: https://drive.google.com/file/d/1bfhTZMzULXmmNmfmAHvzmzFv-eVMoypc/view
Link to ICC: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x
Link to IC Primer: http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf
Fully understanding the multisystemic issues requires a specialist level of training. Unfortunately, the lack of experts available leaves general practitioners to fill in the gap. At this time there are a number of resources available that can guide a general practitioner to have a general knowledge that can lead to support to improve quality of life.
RESOURCE LIST provides links to information provided by experts. This includes information, videos, easy to read articles, and doctor education materials. https://drive.google.com/file/d/1XY3cTtEeM-kt1ZGsk5nPMjdcjYFQmg5J/view
Helping patients to cope with ME is based on symptom management. While many symptoms can be treated the same as other patients, there are some important differences that should be taken into consideration.
ISSUES SPECIFIC TO ME
Patients CANNOT exercise safely.
This point cannot be stressed enough. Patients have been harmed for decades due to recommendations to gradually increase activity or exercise. This patient population is not likely to be more active than is safe but more active than is safe. Giving explicit prescriptions for rest is needed for patients to fully understand the importance of not exceeding the limited window of function.
Recommending exercise is contraindicated due to the damaged oxygen exchange and impaired energy production.
See Workwell information: http://www.workwellfoundation.org/wp-content/uploads/2018/05/MECFS-GET-Letter-to-Health-Care-Providers-v4-30-2.pdf
UNDERSTANDING SPECIFIC RISKS
Patient’s often have blood brain barrier issues which lead to an inability to tolerate many medications.
Serious side effects from medications are common, including increased risk of dangerous withdrawal symptoms when trying to stop a medication. This is a partial list of medications that cause serious withdrawal symptoms. Extra care should be given before considering using any of these medications. Lyrica, Amitriptyline, Klonopin, Effexor, Lamictal, Valium, Nortriptyline, Tramadol, Morphine (all forms), Gabapentin/Neurontin, Cymbalta, Celexa, Wellbutrin, and Lorazepam/Ativan.
Support for malabsorption – ME patients often require vitamin and mineral levels to be in higher range of normal to improve quality of life. Before turning to dangerous medications Vit and mineral levels should be tested. Unfortunately, blood levels do not always give adequate information so some trial and error of supplements may be required.
Genetic component – many ME patients have been found to have MTHFR gene mutation. Check for mutations and supplement appropriately.
Cognitive issue lead to misunderstandings about doctor directions and an impaired ability to remember directions. Clearly written notes with more frequent follow-up appointments are necessary.
Cognitive issues also mean word processing is slowed so doctor visits must be extended to at least double the normal patient visit in order to allow enough time for communication with the patient.
Homeostasis is impaired – many systems are easily affected so care must be taken to avoid shocking the system. With medication that often means start very low and increase very slow. Patients have difficulty maintaining body temperature, keeping hormone levels in balance, equalizing blood pressure, etc.
Symptoms for issues may not present normally – Many patients will not have a fever during infections, and other signs and symptoms normally associated with bacterial or viral infections or other health issues may not be present. These patients do not have a normal immune system and will need careful testing. Gallbladder issues is one area that may cause illness or GI issues, but does not present with normal symptoms.
As supportive care leads to improvement in quality of life, patients may have a false sense of recovery. Patients must be cautioned to continue limiting activity to a level that avoids post exertional neuroimmune exhaustion (PENE).
Exceeding limits (pushes and crashes) increases the risk of permanent damage to the central nervous system.
SPECIALISTS TO UTILIZE
Neurologist familiar with ME. Information sheet regarding neurological issues: https://drive.google.com/file/d/1iZcQ14VaqkHXDb7Dim1VG1qLt8cYZOSz/view
Cardiologist familiar with ME. (Usually an EP cardiologist) Information sheet regarding cardiology issues: https://drive.google.com/file/d/1eWNB_-sw9tZmANcE-FMTY1OQQbXLaAgd/view
Immunologist familiar with low NK cell function, reactivation of viruses, and treatments using long term antivirals and IVIG. Information sheet regarding immunology issues:
https://drive.google.com/file/d/1GBIwpy4GIaFDIAY4cJ-JYtIdYS71cOlJ/view
UNDERSTANDING LEVELS OF MYALGIC ENCEPHALOMYELITIS
SEVERE ME
Medical intervention for a Severe ME patient is extremely difficult due to the severity of the systems affected. Some things to keep in mind.
· Inability to get to the doctor’s office (these patients require in home visits) – A caregiver is required and it is important to have a good working relationship with the caregiver.
· Light, sound, motion, odors may lead to neurological reactions causing patients to lose awareness of their surroundings, have paralysis and/or seizures.
· Extreme difficulty engaging in conversation. Texting may work best.
· Having a good understanding BEFORE meeting with patient will minimize the effort required by the patient. Reminder that each interaction will exacerbate the symptoms so being as efficient as possible with minimal interaction is necessary to prevent undue harm.
For information and resources materials for caring for a Severe ME patient go to: http://www.stonebird.co.uk/
LOW MODERATE ME
· Mostly home bound and often bed bound due to severity of PENE so doctor visits will cause exacerbation of symptoms.
· Danger of exposure to doctor’s office due to immune dysfunction means doing as much by phone or video to avoid harm
· Sensory overload while at doctor’s office leading to inability to communicate – Memory issues so directions need to be written down.
· Extended recovery to get back to baseline after doctor visit either at doctor’s office or in the home.
SURGERY
Special care needs to be taken for ME patients to prepare for surgery. See expert information here: http://www.cfidsselfhelp.org/library/dr-lapp%25E2%2580%2599s-surgery-recommendations
MORTALITY
The oxygen exchange malfunction and the energy production system issues lead to many issues including cardiac abnormalities which may significantly reduce lifespan.
The immune system dysfunction leads to opportunistic infections which can be life threatening, and significantly raises the risk of cancer at an earlier age than normal.
The severity of the illness and intractable pain issues along with the cognitive issues makes this patient population a high risk for suicide. Pain management is a high priority to prevent suicide. Educating family about the illness and supporting life style changes that improve quality of life are essential to patient survival. Treating these patients in a similar manner to MS and other similar diseases so the patient does not feel blamed for being ill will give patients the support they need. Feeling blamed and a burden to family increases the risk for suicide.
As with all support group files, this is prepared for informational purposes and is not to be considered medical advice.
1/26/2019
That’s a lot of reading! Thanks Colleen. This comment registered with me: An ME patient’s physical capabilities will present inaccurately during doctor visits. A key point for all health professionals to learn! Negative tests and a healthy looking patient make life difficult for doctors! I will pass this on. Jan
Sometimes a quick little quote during a lesson may help get a message across.
– Is it true/standard that during doctors training, part of the lesson/attitude is about keeping it simple?
Not imagining the patient has something exotic, but check first for simple/standard issues.
I saw something along the lines of: If you hear hooves, don’t assume it’s a zebra. (It’s most likely to be a donkey.)
My addition to this is: Yes, it probably is a donkey. But you could hear hooves, and it’s a unicorn. – Just saying.
The more people with a condition presumably makes it more necessary that this diagnosis is considered earlier. Maybe the key is to persuade them the post exertional response is a real condition? Thanks, Jan. I will pass this on.
Your note that there is limited time to dedicate to me education is a huge problem for patients. Especially those that have had symptoms for a number of years. To start with key symptoms should be appearing in other specialities as my journey to diagnosis involved 9 consultants. For example I had suffered from insomnia/interrupted sleep for over 2 years. I was unable to sleep for longer than an hour I would wake usually head dripping in sweat feeling sick etc so would have to change go to loo etc before attempting sleep again. On my 4th or 5th cycle of sleep I might get a couple of hour. It took months for my go to refer me to sleep clinic because I was recovering from spinal surgery & 5 years of referred neural pain and maxed out on opiates. Firstly my overnight home sleep test showed I had severe sleep apnea with my sats dropping to 72% & breathing interrupted 68 times a minute. So all the symptoms of sleep apnea were making me feel dreadful but everything gets covered by main issue and ignored. I had cpap and was soooooo excited as I thought this was the reason I felt like I was dying. My early morning symptoms went but I was still not able to sustain sleep for longer than an hour. For a year I would beg the consultant to listen to me but the sleep clinic only care about compliance with cpap and because I was so petrified of sleeping without it I would be wearing for at least 7 hours so they were not interested. My begging eventually got me a night in the sleep clinic and of course the exertion and effort to get to the hospital in the evening meant I almost passed out and slept for 3 hours and then another 2. They couldn’t find anything wrong. I tried one last time with the consultant when I went to get my results. I was prepared and didn’t allow him to dismiss me due to my opiates, my weight or poor sleep hygiene. I said it was their responsibility as sleep specialists. I ended up pushing him to say there was nothing they could do as it was insomnia and this was treated via gp clinics!!!!!!! I felt traumatised coming out of that clinic. No one was believing me.
Before I forget I was also very very deficient in vitamin d and was treated before attending sleep clinic.
By this time I had seen pain clinic, 2 private Dermatologist’s (excessive head and patch sweating was so severe it was stopping me doing everything it was not hyperhydrosis) 2 private Endochrineologist’s Nhs Dermatologist 2Nhs Endochrineologist’s. Along the way I found out I had a tumour on my pituitary gland & insulin resistant syndrome (only identified in blood glucose tests prior to surgery to remove pituitary growth because I had excess growth hormone & they thought I had acromegaly but in pre surgery blood tests it didn’t show up) I was deveststed when they told me as I didn’t think I could carry on feeling so ill. As my hormones were trashed & I was clinically obese it was suggested that it was my weight causing this unexplained sweating along with my opiates and because of my insulin resistant syndrome I wouldn’t be able to lose enough weight to significantly improve my health so bariatric surgery was my best option as it is known to reset many hormones. By this time I was bed bound with carers preparing meals helping me shower etc only leaving house for hospital appointments. I was then subjected to the fast track qualification for bariatric surgery attending medical assessments weight mgt classes lectures and a whole round of pre op assessments which included a psychological assesment to ensure I had the right mindset for the pre & post op diet & exercise plans. By this time I was so sick I was hardly able to shower and struggling to sit up to eat meals and my pain levels were off the scale. Thankfully I was saved from surgery as I told them that I wasn’t able to cope day to day and that I didn’t believe my symptoms would be cured as there was always a physiological response that followed the sweating but because no one ever really listened when I described these sweats I now know these were me crashes as I would have to lie down & my whole body would curl into itself I felt sick my head hurt and I would lie & rest in dark for 4 hours until I recovered enough to move. As the surgery was postponed I still wanted to try and deal with my weight so my very caring gp saw me for a double appt at the end of his surgery so I could weigh in and update him on symptoms etc. As I had longer with him it meant he was able to ask me more questions about my pain etc. In the second appt he diagnosed me with fibromyalgia he admitted he did not know a lot about it & gave me some information. I bought a book written by a doctor that has fibromyalgia and I felt beyond angry that one of the key symptoms was the inability to sustain sleep and the second picture to feature on a google search was a man with profusion head sweats. I started reading up on how to manage symptoms and was feeling hopeful. 2 months later I saw my Endochrineologist for what should have been my post op check. I asked him if he knew how to best manage weight loss with fibromyalgia. He said I don’t know anything about that side of things but my colleague is a specialist his exact words were – don’t be put off by the name but she runs the fatigue clinic but she will be able to help you. Six months later I saw my 10th consultant. As I was in the middle explaining my history & symptoms – she stopped me and said you have severe ME. I will stop now. For Education in ME to be effective it needs to not only be a module in its own right but key symptoms need to be cross referenced into other specialities. There is much much more I have not mentioned. ME is complex & requires time. I moved & had just signed on with a new gp 2 months before I had my ME diagnosis. My old gp wrote a summary document & provided copies of key consultant letters for me to give to my new gp. For the first 4 months he refused to do a home visit as I had visited the practice when I joined so he didn’t see why I couldn’t come in. He then started visiting me at home where I tried to give him some history he was here for an hour, he came back a week later as we hadn’t covered everything. He viewed it as psychological in origin so our discussions were not easy. At the end of that second visit which was also about an hour his departing comment after reminding me of its psychological origin was I’m going to have to do a lot of reading in reference to my records. ME is not something that can be condensed. I hope this is of some help. Good luck (apols for it being longwinded my brain can no longer summarise information it all comes out in most longwinded way possible.
My guess is that there are a number of places in the curriculum that issues surrounding ME could be addressed, if the will was there. I was told that one medical school allotted 1 hour to cover neurological conditions. There are over 600 different neuro conditions! Many people with neuro conditions have talked to me about their frustration with the lack of knowledge and services for their condition in the NHS. We ae not the only people who have to travel for consultations!
Learning the details about a condition presumably has to come after all the basics have been covered and once a decision has been made about which branch of medicine a student will specialise in. Your story highlights the difficulties with experiencing a number of severe symptoms around the same time, and the challenge for specialists in one condition in understanding the interplay of those symptoms. Your point about people with ME not always following ‘usual medical rules’ is a key one IMHO. Thanks, I will pass this on. Jan
I am lucky in that I only have moderate CFS/ME, but it has led to inability to work full time, and still massively impacts my life. I would say, do not judge because the person sitting in front of you looks well and fit, can walk briskly, etc., that they don’t suffer at other times – I have just spent 75% of my time over a period of 3 months, in bed – and yet I managed a several miles walk just the other day. I also echo what others have said about deconditioning theory being unproven and contradicting my experience. On a ‘good’ day, I crave, and get, good quality exercise (hill-walking; vigorous gardening; horse riding; outdoor swimming). On a ‘bad’ day I am effectively in bed propped up with pillows all or most of the day. More draining than either rest or exercise is standing, walking slowly, sitting in the same position in a chair for a long time, being in social situations (feeling ‘on’) for a long time, and being exposed to lighting, scents (especially washing powder, fabric conditioner and air ‘fresheners’), noise, trying to concentrate on filtering sounds (a cocktail party is my ultimate nightmare, and many workplaces would be impossible). I don’t ‘pace’ in a traditional way, instead, I give my body what it needs on the day – either activity vigorous enough to get my blood pumping to overcome OI and feeling cold, OR resting up, with my back supported and my feet elevated. I would love more help and research on managing symptoms of sensory and emotional overload, and would love if the NHS could prescribe helpful supplements, and develop psychological support not based on CBT (which aims to change behaviours and beliefs) but instead develops self-empathy and self-connection (for example, some mindfulness techniques, and Non Violent Communication self-connection techniques). The moment I stopped trying CBT techniques and traditional pacing, and instead started trying to really get in touch with my deep needs and intuition, the better I’ve been able to meet my needs for rest and my love of exercise. This illness is a disability, and we should be supported to do activities that bring meaning to our lives, if we can tolerate them – not simply told to rest. We are all different and unique, and people who are bed-bound need first of all avoidance of harm by not subjecting to harmful treatments. People who can tolerate some activity/exercise need support in deepening their intuition about when it’s right to engage in activity, and when rest is needed. GET works in the opposite way to this, as it makes people over-ride their intuition (either to stop when they are feeling good, or to push on past fatigue and pain) – as well as the physical damage this can cause, losing touch with intuition is losing a valuable part of the self, which could be developed to help one’s self to heal.
I also have moderate ME but am in awe at the range of activities you can take part in! We are all different, of course, and your story highlights the need for research to nail down the different subgroups, so there is less guesswork and confusion about how to manage / treat our conditions. I will pass this on to Dr Muirhead. Jan
I read this blog entry today, which sums up how and why doctors should listen to patients.
It is relevant for all illnesses.
https://alifehidden.com/junior-doctor-training/?fbclid=IwAR2kbTVsBtaMmRewp7jSoE-WsiNAxbeuoiIU44dTTxvTlYDbEii9M0XA7qE
I posted this on WAMES FB recently and others agree it is a good article, so I will pass it on to Dr Muirhead in case she hasn’t seen it. Thanks, Jan
Many cases of chronic disabling lifelong ME could be prevented with early intervention, information about pacing and lifestyle changes in the early days of the illness. So GPs need a strategy for taking first reported symptoms of fatigue seriously. In the absence of diagnostic tests, examine for lymphatic tenderness, enquire if “fatigue” feels like a heavy lead blanket that is present upon waking, advise about pacing and making lifestyle changes and impress upon the patient the importance of not “struggling through” exceeding their limits at work or school, but instead taking a complete break for at least eight weeks to recover their strength.
Thanks Kate. A ‘heavy lead blanket’ is a good way of describing the ME experience. I will pass this on. Jan
People with severe “M.E” feel very,very ill. Fatigue is NOT a primary symptom. LISTEN AND BELIEVE The patient, do not foist any pre-conceived ideas upon them. There is always a REASON for a patient being in a high state of debilitation. Healthy people do not collapse suddenly without good cause. After 13 years of extreme unwellness with every “M.E” symptom imaginable including sickness so severe the acid made me lose ALL my teeth……..I was finally diagnosed with SLE. Following investigations for this, long standing Bronchiectasis also came to light. I am now receiving the CORRECT treatment ( I was previously sent to psychiatry) but I am still very ill indeed.
That’s a long time to be so very ill. Your story is a reminder that misdiagnosis or missing a co-existent diagnosis is always a danger. Thanks for sharing. I will pass this on to Dr Muirhead. Jan
As more and more doctors are connecting ME and MCAS, it is important to consider that MCAS might be causing patient’s ME. My personal belief is that it is true in some (possibly in many) cases of ME. It’s like a headache. You have a symptom, but there could be many causes. The good news is that MCAS can sometimes be positively tested. The NHS lab in Sheffield can positively test for Prostaglandin and Methyl histamine. The new generation of doctors needs to be aware that there are relatively straight forward tests here in the UK. There are NHS specialists who know about these tests and will happily arrange them.
In our case, it appears, that ME/MCAS has a genetic prevalence. We also have diagnosed Crohn’s, asthma and non IgE mediated allergy type responses which suggest a multisystem inflammatory condition. In cases of MCAS all inflammatory reactions can at least to a degree be controlled by MCAS medication. I would suggest looking for a hypersensitivity to environmental and emotional triggers.
Both my children as well as myself have the condition. The symptoms vary. Where in my case the hypersensitivity was causing many reactions including the fatigue (the list is very long) to the point I was in bed for many years, in my daughter the condition manifested more as extreme fatigue and anxiety that caused her to be in bed all the time. In my son the extreme (at times) fatigue was somehow overshadowed by very severe intestinal inflammation, asthma and skin reactions.
The main message to future doctors: look at the whole person and trust their concerns, you spend 10 minutes with them, they live in that body.
I also believe that patients with chronic conditions should be allocated a lot more time with the doctor. A lot of NHS resources could be spared if the diagnosis were more accurate.
Mast Cell Activation Syndrome is an interesting suggestion. Its association with POTS is better known and it is a differential diagnosis for ME, as well as co-existent one. Thanks for pointing this out. I will pass this on to Dr Muirhead, Jan.
I was trying to emphasise how differently the same condition could manifest itself in the same family. If we had no family history, my daughter would have been diagnosed with ME and sent to therapy and graded exercise (thanks to idiots who recommended this treatment to NICE). Her main symptom was extreme overwhelming fatigue. She could sleep anywhere, any time, all the time. The allergy like symptoms and various reactions and asthma were practically ignored even by her. The beginning of ME in many people coincides with an assault on body’s immune system like an infection. Mast cells (the main players in MCAS) ARE your immune system! Apparently 40% of ME sufferers have multiple chemical sensitivity. I believe that number is higher. The reactions are often ignored as it is the debilitating fatigue that literally stops you from living your life.
I would like to see all ME sufferers to be tested for Prostaglandin F2Alpha (the most common mast cell metabolite that is elevated in MCAS). If anyone reading this suffers from CFS and has even minor allergy like reactions, asthma, fibromyalgia, POTS or digestive symptoms, get this test done! Mastocytosis charity will point you in the direction of the specialists who know about the test and can request it. I believe the same Sheffield lab (Protein Reference Unit) can also do this test privately. Do not rely on normal Tryptase and do not believe the doctors who base their diagnosis on Tryptase alone!
Having said the above, I believe in some cases the mast cells are to blame for everyhting and can be the cause of all problems and in others they could be a secondary reaction. In both cases controlling the mediators will help with symptoms a lot.
I would recommend youtube video: Lawrence Afrin Immunology and Allergy: Mast Cell 101
Thanks for the clarification, Jan