Why should you care about M.E.?

Lynn Gilderdale, severe M.E. sufferer - photo via Guardian website

The importance of awareness

This is the first time I have marked the M.E. Awareness Week, despite having been diagnosed with it for 6 years. Before, I always thought, ‘why do people need to be aware of my illness? Isn’t that just whingeing?’

 

But now I see the importance.
We need people to be aware, because we need a cure.  We won’t find a cure till we invest in research.  And our governments won’t spend money on research until they are put under pressure by voters to do so.

 
At the moment there is precious little research being done on M.E., and that which is funded is being spent on ‘psychological management techniques’ rather than looking  for biomedical causes and searching for appropriate medical treatments for this debilitating illness. We need people to say with us that this isn’t right.

 

But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. (M.E.) patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.

 

Dr. Nancy Klimas, world-renowned physician and researcher for AIDS and Chronic Fatigue Syndrome (ME) as quoted from the Q & A New York Times article “Is a Virus the Cause of Fatigue Syndrome?” – posted online Oct 15, 2009

 

What is M.E.?
 
M.E. stands for Myalgic Encephalomyelits. Let’s break it down:
Myalgic = muscle pain and muscular exhaustion
Encephalo-myelitis = inflammation of the brain (encephalo) and spinal cord causing neurological symptoms.
 

M.E. is thought by experts in the field to be an auto-immune/neurological disease, similar to M.S. There are some who think that it is caused by a retrovirus (like HIV) which attacks the brain, and there are others who think that it is more likely to be an autoimmune illness (like M.S.) where the body is attacking itself.
 

Outbreaks and epidemics of the illness have been observed since 1934 and M.E. has been classified as an organic neurological illness by the World Health Organisation (WHO) since 1969.
 

What are the symptoms of M.E.?

The defining characteristic of M.E. is what is known as ‘post-exertional neuroimmune exhaustion’ (PENE). This means that after exertion (for a mild sufferer this could be a short walk, for a severe sufferer this could be something as little as concentrating on listening to a 30 second conversation) you have a relapse of symptoms which are neurological and/or auto-immune in character. The symptoms are often delayed by 24 hours or more, and then you get ‘payback’.
 

For most people, physical exercise promotes health. For people with M.E., physical exercise (beyond their limitations) makes the condition worse.
For example, I need to be in bed for most of the day. If I sit up for too long in a day, two days later, I might find that I have more pain, my heart randomly goes into tachycardia, my concentration is affected or my speech affected, I am short of breath on standing or I find that my legs give way if I try to walk more than a few paces.

 
Other common symptoms experienced by sufferers include:
raised glands, a flu-like feeling, headaches, sleep disturbances, muscle twitching, severe food allergies, noise and light sensitivity, seizures, inability to express language (ataxia), difficulty swallowing, loss of temperature control, muscle paralysis.

 
What treatments are available for M.E.?
 
At the moment, despite having been classified as a neurological disease by the World Health Organisation (WHO) for several decades, the medical community is not very well-informed about M.E. A vocal minority of psychiatrists have obfuscated the issue, renaming it ‘Chronic Fatigue Syndrome’ in 1988, and using a more vague set of diagnostic criteria.

 
They like to use the ‘Oxford criteria’ which just has ‘unexplained fatigue lasting 6 months or longer’ plus just one other symptom, as opposed to the more precise Canadian or International Consensus Criteria which focuses on endocrine, autoimmune and neurological symptoms. The Oxford Criteria is so vague that it is no doubt collecting together patients under the dustbin ‘chronic fatigue syndrome’ label who actually suffer from misdiagnosed depression, Lyme disease, coeliac disease, MS, or any other illness that has fatigue as a major symptom.

 
Their claims that M.E. is a psycho-somatic illness (somatisation disorder) or similar to stress-related exhaustion has pushed back research for decades. As a result, when an M.E. patient goes to a doctor, they never know whether they will be treated seriously or fobbed off with ‘get out of bed and get some exercise’.

 
The things that are most effective in helping an M.E. patient to recover are rest and ‘pacing’ (ie not pushing your body beyond its limitations). Unfortunately, because some psychiatrists believe the problem to be ‘exercise phobia’ and ‘false illness beliefs’ they recommend Graded Exercise Therapy (where you increase your exercise and ignore any symptoms you feel). Tragically, this and CBT (cognitive behavioural therapy) are currently recommended by the NHS as the best treatments for M.E. While CBT can be helpful in managing the condition (depending on how it’s done), Graded Exercise Therapy is the WORST thing that you can do for someone with M.E. and many patients have been physically damaged, often permanently, by this advice.

 
Those with the best prognosis are those who are diagnosed early, who catch it while they are young, who don’t exert themselves beyond their limitations, and who REST, especially in the early stages. Combatting stress, cognitive therapies and building up activity levels, including physical exercise are good but only once the body has started to heal itself.

 
Graded Exercise Therapy for ME is like physiotherapy after a broken leg – it is only useful once the leg has healed. If you try and force someone to  walk when their leg is still broken, insisting that they are imagining the pain, they will never recover.

 
How serious is M.E.?
 
It is a fluctuating condition, so some days, weeks or months can be worse than others. Some sufferers are mildly affected (for example, able to work full-time or almost full-time but needing to significantly rest at the weekends and limit their physical exercise.)
 

On the most severe end of the scale patients are bedbound, unable to move themselves, often incontinent or having to use a commode, unable to tolerate light or noise and in constant, agonising pain. It is a living hell, and can last for decades.
 

It is estimated that among the approximately 250,000 sufferers in the UK, a small percentage will make a full recovery, most will improve but not fully recover and some don’t improve. 25% of sufferers are housebound or bedbound.
 

Although it is relatively rare to die of M.E., it can be fatal. There are two people I know of in the UK so far this year that have died of M.E.  Severe sufferers Victoria Webster, aged 18 and Emily Collingridge, aged 30, both died of complications from M.E. in 2012.  Emily had been ill for 24 years; Victoria had been ill, bedbound, for most of her life. You can read Emily’s story here .

 
Many more deaths from M.E. go unreported. Typically deaths are from cardiac arrest, although renal failure is another common cause of death for those with very severe M.E. Sometimes people with M.E. are made worse, even fatally, by the supposed ‘treatment’ they receive from doctors.
 

Sophia Mirza is one such example. She had severe M.E., and was bedbound. She refused treatment at a ‘CFS/ME’ centre because she knew that they used Graded Exercise Therapy to treat it. Because she refused treatment, they sectioned her and took her to a psychiatric hospital where she received psychiatric ‘treatment’ for her ‘false illness beliefs’. She never recovered.

 
She died from M.E. and was the first person in the UK to have Chronic Fatigue Syndrome officially listed as cause of death. At the autopsy they found that she had dorsal root ganglionitis – swelling of the nerves near the brain, which would have accounted for her severe pain and neurological symptoms. This is consistent with the original hypothesis of M.E. involving inflammation in the brain (encephalomyelitis).
 

(There was an inquest into her death; two psychiatrists agreed that the other psychiatrists who had taken Sophia to a mental hospital had done nothing wrong. And that was the end of the inquest.)

 
Additionally there are those like Lynn Gilderdale for whom the pain of the illness becomes too much and they commit suicide. Lynn was ill for 17 years, bedbound, tubefed, unable to speak. Her mother helped her to commit suicide when she could bear it no longer. She was initially treated with Graded Exercise Therapy which made her worse, and she was also initially suspected of having a psychosomatic illness. At her autopsy they also found dorsal root ganglionitis, like Sophia Mirza. Their illness was proven demonstrably to be physical and organic in origin.

 
******

 
Getting angry

 
I was not angry when I had glandular fever in 1996 in my late teens.
I felt really exhausted and my sister had recently been diagnosed with glandular fever: could I have the same thing? The doctor scoffed and told me to do more exercise and then I would start to have more energy.
 

A week later I saw another doctor. The tests confirmed that I did indeed have glandular fever (mononucleosis), and quite a severe case of it. “You need to rest as much as possible and whatever you do, don’t exercise. It’s the worst thing you can do with glandular fever,” she said.
 

My glandular fever was very severe and I missed several months of school. From that time on I was prone to infections and even a slight cold would knock me out for 2 weeks.
 

I was not angry when my M.E. was misdiagnosed as depression in 2005.
 

At that time I was able to work full-time, but I was falling asleep in the afternoons – then one day I found that I was having strange cognitive symptoms. I couldn’t read even a magazine article – it didn’t make any sense to me. I knew it wasn’t depression – I had had depression before and I knew what it felt like. I tired rapidly but my mood was good and I didn’t feel depressed or ‘numb’.

 
The doctor said it was probably depression and even if it were ‘chronic fatigue syndrome’ the treatment of graded exercise and antidepressants would treat both. I dutifully reduced stress, took antidepressants, gradually increased my exercise until I was running 5 miles, 3 times a week.
 

Within 2 years I had had a major M.E. relapse and was in a wheelchair.
I wasn’t angry in 2010 when they said that it would probably be fine for me to give birth naturally rather than have a C-section. The physical exertion of labour triggered a major M.E. relapse, leaving me temporarily bedbound and then subsequently housebound.

 

The bout of glandular fever I had was the trigger for my M.E., though I was initially mildly affected.  Then, like many others, I was advised to increase my exercise instead of resting, and my M.E. became severe.
I wasn’t angry then.

 
But then one of my friends got M.E. She contracted glandular fever while abroad and her body shut down and she found herself feeling constantly flu-ey and unable to walk more than a few paces.
 

And THEN I got angry.

  • I was angry that she had to be ill for 6 months before she even got a diagnosis.
  • I was angry that her diagnosis was not M.E. but ‘Chronic Fatigue Syndrome’, a ridiculously misleading name that  trivialises what is a very serious and debilitating illness.
  • I was angry that after those 6 months she would then be on a waiting list for 18 months before she could see a specialist, and in the meantime she would be left to try to manage it herself
  • I was angry that when she saw a physio they told her she needed to do Graded Exercise and bullied her into doing more stretching than she could manage and it set her back weeks in her recovery.
  • l was angry that when she eventually does see a specialist, she may not see someone who accepts that M.E. is  a physical illness. If she were lucky, she would see a doctor who would tell her she had a serious illness and she should rest and do the little activity that she was able to – and hope it improved in time. In other words, you get told ‘there’s nothing we can do’. That’s if she’s lucky.  If she were unlucky, depending on what part of the country she was in, she would be seen by a psychiatrist who would dismiss her real physical illness as a psycho-somatic disorder that would be overcome if only she could decide to get better.
  • I was angry that she could be potentially sectioned under the Mental Health Act for ‘false illness beliefs’.
  • I was angry that if she were under 18 her parents would likely be investigated by social services for encouraging ‘school phobia’.
  • I was angry that she was likely to have to fight for any sickness benefits she applied for, such is the skeptical attitude of the social services towards M.E.
  • I was angry that she would be confronted with thousands of alternative therapies, all claiming to be able to fully cure M.E., all expensive, without any way of knowing whether they would help her or make her worse.
  • I was angry that she could be one of the increasing number who die of M.E., without any chance of getting treatment, simply because the disease is not being taken seriously and there is a lack of research.

 
There are some good and sympathetic doctors around and there are many people with ME who make full and fast recoveries. But the system is failing those with long-term or severe ME.
 

So this is why I am using my limited cognitive energy this week to write a post on M.E awareness.
 

I have finally got angry. I would very much like for you to get angry too.
 

***********

Get informed:

Get angry:

  •   Write to your local M.P. requesting better biomedical research and treatment and adoption of the widely-respected International Consensus Criteria as a definition of M.E. to aid research and diagnosis.

This post is my personal opinion based on my experience and reading and should not be taken as medical advice. If you suspect you have M.E. then you will need the advice of a good doctor.  

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36 Responses to Why should you care about M.E.?

  1. Tamara 10th April, 2019 at 3:05 am #

    Hi Tanya I’m only 20 and after 3 and a half years im finally diagnosed with M.E. My doctor prescribed me some vitamins. After reading this i must admit I’m scared. My first smptoms at 17 were fatique and heart paltipations,then year later i developed muscle pain bone pain and pain. It became better when I used vit d supplements docs discovered only vit D deficiency at that time. It was kinda managable but since 2019 when my granad died i had big stress then my symptoms got worse hot and cold flashes,alergies,chest pain, chocking,vomiting. Chest pain and nausea is now gone but im still very ill. I was diagnosed month ago but i still dont feel major improvment. Im scared what future gonna bring to me. I want to take care of myself and get a job like most teens my age do. But now i feel very week and im scared that this will even progres.Will treatman with vitamins work?? Sorry for my bad Eng I’m from Serbia. And im sorry gor what you too had to go throught with this illnes.

  2. leelaplay 10th May, 2014 at 1:57 am #

    Hi Tanya,

    Thanks for your blog. I think you did an excellent job at helping people understand much of what is involved when someone gets a diagnosis of ME and really appreciate you doing so. I resonated with getting angrier for our friends than we do for ourselves!

    I thought your response to Katie on PACE was excellent and comprehensive. One other fact is that mid-study, after getting their results, they lowered their definition of ‘recovery’ (100 being no disability). SF-16 Intake level of severely disabled was 65 – recovered supposed to be 85 but they changed it to 60. So patients could be sicker when ending the study and still be called ‘recovered’.

    They also used Oxford and even no definitions and P White admitted that PACE is not on patients with ME/CFS. So the few who did improve a bit likely did not have ME/CFS. And I guess the same would be true for Katie’s patients.

    I hope you take the following info as a compliment it is. I rarely have the energy to comment often but I thought you did such a fantastic job, that I’d like to add to the few parts I saw as needing a bit more info. And in case they’re of help to your readers now or for use in future blogs.

    1. Diagnosis is becoming easy international guidelines. Invest in ME has some available to print out or order. Many patients have found it helpful to bring a printed out document with them – or just the specific pages – for eg the diagnostic chart, or the info on anaesthesia

    The Canadian Consensus Criteria (CCC) (2003) is the national guideline for Canada and the US now (in the IACFSME Primer they use the CCC), and I believe Australia and New Zealand as well but would have to check those 2. Many expert clinicians and researchers woeld-wide use it.
    http://www.phac-aspc.gc.ca/dpg-eng.php#cfs

    The International update of the CCC,written by many of the world experts( MEICC)(2010)
    http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

    and the US IACFSME Primer (revised 2014) (and it’s also on the Canadian guidelines)
    http://www.iacfsme.org/LinkClick.aspx?fileticket=zYEzLn11Ej0%3d&tabid=509

    2. When discussing treatment

    a) you said, “While CBT can be helpful in managing the condition (depending on how it’s done),” which I think doesn’t make clear that in the UK, CBT is false-illness belief instead of helpful counselling which can greatly harm patients + in any case it is not treatment – it is a best counselling to help cope with having a severe disease

    b) while you did a great job at describing how a vocal minority have promoted wrong info – to use CBT and GET – you forgot to mention what treatment besides rest and pacing are available. All 3 of the guidelines I posted above describe tests and treatment.

    c) things like combating stress & counseling can useful in any severe disease like ME, cancer, MS should patients not have the tools already, but they should not take the place of treatment. And the question of “building up activity levels, including physical exercise” is not often possible in ME and can easily be harmful. Again the 3 guidelines address this.

    d) I really liked the beginning of this! “Graded Exercise Therapy for ME is like physiotherapy after a broken leg – it is only useful once the leg has healed. If you try and force someone to walk when their leg is still broken, insisting that they are imagining the pain, they will never recover.” But the 2nd1/2 implies most recover and will benefit by GET then, which the research says is not so. .

    3. This. to me, gives the impressions of more improvement than I’ve seen the research indicate though it’s great the 25% severe are described. “It is estimated that among the approximately 250,000 sufferers in the UK, a small percentage will make a full recovery, most will improve but not fully recover and some don’t improve. 25% of sufferers are housebound or bedbound.”

    The IACFSME says many improve a bit after onset then plateau, remaining disabled, possible relapsing/remitting with a small percent able to work to some degree with accommodations. And also a small percent who worsen over time.

    Jason (2011) did a 10 year study that showed no recovery.

    One final resource is this list prepared by Lisa Patrison that provides an updated list with a brief summary of each of the 500+ peer-reviewed articles showing physiological medical abnormalities in ME/CFS. that patients mind find useful with doctors.
    http://www.paradigmchange.me/cfs-info/me-and-cfs-medical-abnormal/me-cfs-and-medical-abnormal.pdf

    • Tanya 10th May, 2014 at 10:48 am #

      Thanks so much for these links. Someone wrote to me and admonished me for dismissing CBT out of hand, so I had altered it as you see above with the phrase ‘depending on how it’s done’. The picture in the UK is SO messy, so that a few places advocate pacing (and have CBT that supports that, helping people to not go beyond their limits). I am noticing that a few places are now calling Graded Exercise Therapy Graded Activity Therapy, and other places are calling something ‘pacing’ which is actually Graded Exercise. It’s a whole big mess, and horrendously confusing. Basically, if something tells you to ignore your symptoms and build up your exercise slowly, no matter how you’re feeling, it’s the bad combination of Graded Exercise and CBT, whereas when someone tells you to listen to your body and under no circumstances to push your body beyond its limitations, that’s closer to pacing.

      Re: what treatment is available – I’m not aware of any treatment for ME available in the UK under the NICE guidelines. There are some symptom management things, such as pain relief, but this is incredibly tightly controlled, and treatments such as IVIG which have been promising in some trials are actually blacklisted by the NICE guidelines. This is why it’s such a scandal. The ICC guidelines give good guidance for treatment, but I am just not sure how much of that is available under the NICE guidelines, so you either have to go private in the UK, or find a very sympathetic doctor who is willing to stick their neck out and risk getting seriously reprimanded (or worse) by the GMC.

      Re: recovery rates. I was basing my loose comments on Dr Charles Shepherd’s comment that he estimated c. 25% recovery, 25% showing no improvement, and 50% showing some improvement but not full recovery. Other studies have put the recovery rate at between 5-9%. There are some, a few, who make a full recovery, so I am not prepared to say that there is no possibility of recovery for ME, as I know some ME patients believe. I agree that the IACFSME says many improve a bit after onset, then plateau. However, of those who recover or improve, they will have, at some point, in some way, increased their physical activity/exercise. That is what I meant by the physiotherapy comment. But I agree that it is still wrong to do it in the method that GET advocates (which is to say, the same amount every day regardless of how you feel).

      Thanks so much for using your precious energy on providing these links. I’m aware that this was written about 2 years ago, and that I’ve also done 2 years worth of ploughing through the ME research papers since I wrote this, so it’s very helpful in bringing it up to date. I’ve been particularly excited by all the studies that seem to have been done over the last year – the VO2 max study conclusively proving that exercise harms ME patients, for example. I’m hoping that at some point, we’ll get to a tipping point, and the psychiatrists will have to go scurrying back to their behavioural disorders.

      • leelaplay 10th May, 2014 at 8:22 pm #

        Thanks for your gracious reply Tanya. I hadn’t realized this was written 2 years ago. It’s aged extremely well. And looks to continue to do so. Your writing makes complex matters clear; it’s a real gift.

        Canada has similar difficulties regarding treatment to the UK. What I like about the guidelines is that they list tests and treatments for symptoms that GPs should be able to prescribe in any country. But they don’t look at treatments that try to get at the (unknown) cause that are working for some in the US – Ampligen, Enbrel, or even rituximab trials are not possible here. And things like low dose naltrexone, IVIG, antivirals depend on doctor, and the state of the moon probably, and few get them + none work for everyone at every stage of the disease.

        I so agree re the state of the research. It has me feeling hopeful. Keller’s study confirming the Snell/Stevens on the need for a 2 day CPET to discriminate ME(CFS) patients, to show post-exertional neuroimmune exhaustion and correct, meaning safe also, heart rate for anaerobic threshold, and that a 1 day test doesn’t work is something new. A confirmation study. Something that is finally starting to happen. And larger studies too. Both of which are needed to have rapid acceptance by non-ME-literate medical professionals. The Norwegian and UK rituximab trials are part of the new wave – they’ll have both.

        And the team who published the recent Japanese study showing neuroinflammation and brain inflammation under PET scan said, “We plan to continue research following this exciting discovery in order to develop objective tests for CFS/ME and ultimately ways to cure and prevent this debilitating disease.”

        More hope – Mady Hornig, who works with Dr Lipkin, the internationally-respected ‘virus hunter’ who’s recently been doing some research on ME (and is crowd-fundng currently as the US HHS won’t fund more) said at the recent IACFSME conference that ME(CFS) research is similar to MS a few decades ago – about to switch from a paper a week to a few a day. And that the conference needs to change to annual because of the volume of research that will be happening. And the Stanford conference shows how people from other fields are now getting involved in ME research, which is exciting..

        My apologies for typos. Despite editing numerous times before sending, I still missed many in my first post; hopefully not so many here.

        Love your last sentence in your reply to me – just the use of the word ‘scurry’ had me picture Gollum-like crabs, rapidly, fearfully, stopping and starting through the shadows and muck of their world, trying to get back under their home rock for safety from the approaching bright light of biomedical research!

  3. Helen 13th November, 2013 at 2:26 pm #

    Hi Tanya, I have come to your blog via ibenedictines and it seems so fortuitous. My son has had ME for the past year, and is one of the lucky ones who has been seen by specialists and is slowly working back to health. I completely agree with you about the lack of medical research, I could hardly believe that there is so little bio-medical knowledge. Do you know of any campaigns for medical research into ME?
    My son has said having this disease is like falling down and picking yourself back up day after day, and your blogs really show this beautifully.
    We too are a Christian family, practicing our faith within the Catholic Church, and I feel blessed to have read your words today. Thank you so much for sharing your thoughts and I will hold you and your family in my prayers.

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