Indonesian government persecution of feminist Anindya Joediono

Indonesian feminist Anindya Joediono has recently been persecuted by government officials. Anindya is no stranger to students’ organizations and feminist collectives, having been involved in numerous leftist movements since 2016.

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In December 2017, Anindya and her company of friends began advocating against urban poor eviction by the officials, and their fight still continues today. She never backs down in writing open criticism addressed to the government to challenge neoliberal policies, including one which regulates the infrastructure development.

On July 6 2018, Anindya was attending a discussion and movie screening invite in a Papua students’ boarding house. The event discussed about the human rights violation by the Indonesian government toward the Papuans. As a context, there’s still a high level of racism against Papuans or Melanesian groups in Indonesia; therefore, Papua-affiliated events are always seen as separatism.

During the discussion, hundreds of the government’s apparatus along with military officers barged in without any warrant and terminated the discussion. While confronting an official and asking for the warrant, Anindya was sexually harassed by one of the police members. Another woman in the location, Isabella, was dragged by them. After being dragged and harassed they were bullied by the police officers.

After the event, Anindya chronicled the case in her social media accounts for several days. Her house was watched by the officers. Her participation as a speaker in a seminar was disrupted when police officers came and interrogated the organizers regarding the nature of the event. Due to her writings in social media accounts, she was reported by the municipal police units (Satpol PP in Bahasa) for defamation. She might face four years in prison.

The chronology of the discussion in the Papuan students’ boarding house is online at the Asian Human Rights Commission page on this case.

Your support and solidarity in this matter is highly appreciated. Please disseminate this information to other radical feminist groups. Thank you.

-Indonesian radical feminists-

 

Nov 9, an update:

Anindya had come and been investigated by the police about a month ago. However, yesterday on November 8, 2018 she received a new summons from the police with a new police report number as well. Anindya was called to be questioned for alleged cases of racism and defamation, not as a witness or suspect. There are indications that the government reports Anindya twice so that it must be charged with a layered article.

For information only, the defamation offense in the Electronic Information and Transaction Law in Indonesia is often used by the authorities / government to criminalize activists. In some cases (including the Anindya case) victims of abuse / rape can be reported on charges of defamation if they speak up to the public, especially if the perpetrators are people who have positions or sit in government.

Anindya has reported and met a special rapporteur from the United Nations some time ago but has not received further assistance regarding her case. We hope that the injustices experienced by Anindya can be of widespread concern.

Best regards,

Indonesian radical feminists

 

Those needing contact details in order to concretely assist the campaign can use anindyabrina@gmail.com

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Misogynist stereotyping in history, Part I: Those prudish Victorian women — culturallyboundgender

Quote

Stereotypes of the “wrong” kind of woman to be are a powerful tool for enforcing expected social norms on female behavior. If you’re talking to anyone on the left, the “wrong” kind of woman can be summed up as something looking a bit like this: The Victorian woman, in the view of the modern left, represents everything a woman ought not to be.

[…]

It is impossible to understand Victorian women’s attitudes toward sex without a comprehension that in the Victorian era, sex was more dangerous than it had ever been, especially for the exact women most famed for their prudishness.

Childbirth was the leading cause of adult female death in the Victorian era, a situation that was significantly worse than in previous centuries.

Deprived of sun exposure in order to keep her skin pale (or, in the lower classes, due to the recent invention of factory work that trapped them indoors 12+ hours a day), the Victorian woman suffered from rickets more than women of previous or subsequent generations. Rickets impacted the bones most profoundly, creating pelvic outlets that were sometimes no wider than a silver dollar.

With bodies twisted by daily wear of restrictive garments, the Victorian woman faced pregnancies that were difficult to maintain. Social mores of the time dictated that visibly pregnant women were to be kept at home, in “confinement.” Deprived of exercise and outdoor activity during pregnancy, the worst was yet to come.
[…]

Article continues at Misogynist stereotyping in history, Part I: Those prudish Victorian women — culturallyboundgender

Assisting the M.E. patient in managing relapses and adrenaline surges

This is a backup of the page Assisting the M.E. patient in managing relapses and adrenaline surges on the Hummingbird’ Foundation website, for use when that site is offline or unavailable in a particular country.

M.E. patients have strict limits on how active they can be. If these limits are breached, symptoms worsen immediately and there is also a further deterioration 24 – 48 hours later, as well as the potential for repeated or severe overexertion to prevent any type of recovery, or cause disease progression or even death.

This paper explains how carers, doctors, and also friends and family members and partners of M.E. patients, can help patients to avoid overexertion and so have their best possible long-term health outcome. It also describes the characteristics and signs of adrenaline surges and relapses in M.E. for the benefit of these individuals, as well as for newly ill M.E. patients themselves.

This paper is designed to be read together with the more detailed Hospital or carer notes for M.E.  paper.

one-page summary of the text is also included on this page plus links to several short HFME videos on this topic.

See the Downloads section below to download this paper in Word or PDF format.

This paper is also including in the new HFME book Caring for the M.E. Patient.

 

Assisting the M.E. patient in managing relapses and adrenaline surges

Copyright © Jodi Bassett November 2010. Updated March 2012. From http://www.hfme.org

M.E. patients have strict limits on how active they can be. If these limits are breached, symptoms worsen immediately and there is also a further deterioration 24 – 48 hours later, as well as the very real potential for repeated or severe overexertion to prevent significant recovery, cause disease progression or even death.

It is very important that M.E. patients stay within their limits. Unfortunately, M.E. patients may find staying within these limits all of the time very difficult for a number of reasons.

This paper explains how carers, doctors, and also friends, family members and partners of M.E. patients, can help patients to avoid overexertion and so have their best possible long-term health outcome. It also describes the characteristics and signs of adrenaline surges and relapses in M.E. for the benefit of these individuals, as well as for newly ill M.E. patients themselves.

This paper is designed to be read together with the more detailed Hospital or carer notes for M.E. paper.

 

What is an adrenaline surge and how does this affect M.E. patients?

People with M.E. can sometimes operate significantly above their actual illness level for certain periods of time thanks to surges of adrenaline – albeit at the cost of severe and prolonged worsening of the illness afterward.

Adrenaline is often referred to as the ‘fight or flight’ hormone as it kicks into action in situations of potential danger. However, adrenaline also kicks in when the body is in physiological difficulty, which is very often what is happening to severe M.E. sufferers. Adrenaline surges make the heart pump faster and raise the blood pressure, forcing blood around the body with greater force to supply the muscles with more oxygen, so that they can make a greater effort. Surges of adrenaline increase the metabolism. They also relax and dilate the airways so that more oxygen than usual can be taken in. Adrenaline surges can also decrease the amount of pain felt. As a result of all of these factors, adrenaline surges – while they last – have the ability to increase physical speed, strength and other physical abilities.

Unfortunately, when these bursts of adrenaline wear off – as they must – people with M.E. are left far more ill as a result for many days, weeks, months or even years of overexertion. People with M.E. are harmed by adrenaline surges, both by the physiological stress to the body of the changes caused by adrenaline, and by the extra activity which adrenaline enables, which may be far beyond the body’s normal limits so that such activity causes damage. For every short term ‘gain’ there is a far greater loss overall.

Surges of adrenaline can last hours, days, weeks or even months at a time.

These adrenaline surges are a bit like credit cards. They allow patients to do things that they could never otherwise do, or ‘afford.’ But the interest rate is extortionate, sky high, a killer. As Clytie, a very ill M.E. patient, explains:

i try to xplain this one in terms of money
ok, yoiu could buy a ferrari, coulnd’t you?
no, i don’t have the money
oh, but you could borrow lots of money, sell your house, talke up dealing drugs, gamble, and in the end you’d have your ferrari
<blank look>
maybe for a day or so, before the l,oan sharks shoot your kneecaps off, and the gangs blackmail you, and you have to find a way to rerpay all that money… could take you a lifetime
<rather frightened look>
yeah. yioyu get the point

M.E. expert Dr Melvin Ramsay explains;

The degree of physical incapacity varies greatly, but is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient. Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them.

 

Why do M.E. patients sometimes overexert themselves, considering the severe consequences?

There are many reasons why this occurs, including the following:

  • Once a patient gets going, stopping can be very difficult. This is due to neurological problems with stopping and starting new tasks easily, and also because once an adrenaline surge has occurred, it takes a long time to wear off.
  • When a patient has become very ill from overexertion or is in the middle of an adrenaline surge, judgement can be affected, and the patient may be lost in the moment and not realize how important it is for them to stop what they are doing as soon as possible.
  • Resting after a relapse is often very difficult for the M.E. patient emotionally. It can be very difficult to lie in a dark quiet room in extreme pain and worse, with no distraction from it. It can be tempting to keep the adrenaline surge going in a small way, to put off the crash. (A bit like drinking more alcohol the day after a night of heavy drinking to delay the inevitable horrible hangover.)
  • Many patients with M.E. have been treated appallingly in the earlier stages of their illness. Medical abuse is very common. Patients have often been told or forced to keep pushing through their limits and that this is what they must do if they ever want to recover. This ignorant advice has forced many patients to develop a very high tolerance for pain and discomfort – and this can be a real obstacle when it comes to training oneself to rest appropriately when experiencing minor symptoms. Patients have often become very used to paying a high price afterwards for every little bit of fun they have or every task they do, and have had to accept this as a way of life for so long that change can be difficult.
  • Many patients, along with much of the general population, have a very strong work ethic and at times find not pushing themselves to do things very difficult. M.E. patients need a level of discipline at least as high as the average Olympic athlete to control and restrict all their activities so completely for years.
  • M.E. is an acute onset disease which means that patients go from healthy to very disabled from one day to the next. Being so disabled so suddenly is shocking and takes a long time to get used to. Particularly in the early years of M.E., patients often feel the need to constantly push at the boundaries to work out where their limits are. This is also often tied to denial of the realities of the disease, and a desire to keep ignoring physical limits in the madly optimistic hope that this will make them go away as quickly as they came.

Other reasons include:

  • Due to the brutal severity of M.E., some M.E. patients must overexert just to live or to have a little bit of basic human contact.
  • Many M.E. patients overexert themselves as they have no other choice, unfortunately, and do not have the appropriate financial or practical support they need due to the political situation facing M.E. patients. Patients with M.E. are also often forced to overexert themselves in order to get the welfare payments they are entitled to (and need to have to survive) and to try and get some basic medical care.
  • Many M.E. patients are told that ‘everyone recovers, it is just a matter of when, and at most you will be well in 5 years’ by ignorant doctors, websites and patients that do not understand the massive difference between the neurological disease M.E. and mere post viral fatigue syndromes. Thus they have no idea that there is a big long-term cost with every short-term relapse, and by the time they do get this information it is often far too late and they have become severely affected and greatly harmed their chances of future recovery.
  • Many M.E. patients are told that they are not ill, and that they cannot do things simply because they believe they can’t. This incredibly abusive brainwashing can lead many patients to again and again try and push past their limits in a brave but misguided effort to ‘mind over matter’ the disease. Unfortunately, many patients have so much faith and trust in their doctors that they ignore what they know to be true about their own bodies and their disease for many months or even years, often ending up severely affected and very disabled.

 

What signs may indicate a relapse or an adrenaline surge?

Signs that a M.E. patient is overexerting and/or running on adrenaline may include the following:

  • Very fast and continuous talking is a sure sign of an adrenaline burst. Speech may also become very loud as the patient becomes unable to modulate their volume level. This may also be accompanied by fast and jittery movements. Speech may make evident feelings of euphoria, over-excitability or wild optimism and will often be less well-considered than normal. The patient may also sit up or stand for longer than usual (without realising they are doing so) or get fired up to undertake tasks that they would usually be too ill to do. (Big cleaning or organisational tasks for example.)
  • After or during an adrenaline surge, sleeping and resting is very difficult as the patient feels ‘wired’ and very “unfatigued”. Sleep onset may be delayed for many hours, perhaps leaving the patient unable to sleep until mid-morning or unable to sleep that night at all. The patient may also only be able to sleep for one or two hours at a time, awaken for a few minutes many times during the night, and/or may experience very light sleep where the slightest noise wakes them up.
  • Particularly in the first few years of the disease, patients may sleep, or be unconscious, for much longer than usual after overexertion, perhaps 12 – 16 hours or more. In very severe cases, the patient may be unable to maintain consciousness for more than a few hours a day.
  • When suffering a severe neurological episode M.E. patients may be mistaken for being drunk or high on drugs. They may slur their words, talk very fast and ramble, seem euphoric and have very poor balance.
  • A lack of facial expression and ‘slack’ facial muscles and/or extreme facial pallor.
  • A burning sensation in the eyes and/or an inability to tolerate visual stimulus and to keep the eyes open.
  • Excessive water drinking (to try to boost blood volume).
  • Excessive hunger and a desire for sugar- or carbohydrate -rich foods. Even after eating, the patient may still feel as if they have very low blood sugar and may need to eat far more often than usual.
  • Sweating or shortness of breath after minor exertion.
  • Visible shaking of the arms or legs or twitching facial muscles.
  • Paralysis and weakness in the muscles or an inability to move, speak or understand speech.
  • Sudden loss of ability to walk.
  • Very sore throat and/or painful and tender glands in the neck (and possibly other flu-like symptoms).
  • Very distinctly pink, purple or blue feet or legs, with white blotches, after standing or sitting for too long.
  • Patients may complain of a severe headache or feeling of pain or pressure at the base of the skull. This may also be accompanied by pain behind one or both eyes or ears, or blackouts.
  • Sudden onset ringing in the ears or loss of hearing.
  • During and after overexertion, a patient’s pulse will very often become much faster (150 bpm or more), their blood pressure will become lower and their temperature may rise and they may feel very hot (or alternating very hot and very cold). Pulse and/or temperature measurements may be useful in determining when a patient is overexerting. As blood pressure readings tend to only be severely abnormal when the patient is standing or sitting upright – which in itself causes relapse – this test will often be counter-productive and inappropriate.

Other things to be aware of:

  • Sometimes when the patient is running on adrenaline, it is very obvious that this is what is happening. The patient is able to do more than usual but feels very unwell and wired; a bit like they haven’t slept in days but have had a LOT of coffee. At other times, particularly where the adrenaline surge is long-lasting, the adrenaline effects can be more subtle and can easily be mistaken for genuine wellbeing for a period of time.
  • When a patient declares that they are improving and suddenly able to do tasks again which they have not been able to do for many months or years – and this occurs right after a very big task has been completed such as a house move or a very taxing trip to the doctor, it is almost certainly an adrenaline surge and not a real improvement. The big task was well beyond their limits and so the body has releases a surge of adrenaline just to cope.
    Unfortunately, this type of lower-level but prolonged adrenaline surge will often be less easily recognized for what it is by the patient, especially where there are problems with memory and placing events which occurred weeks ago in the appropriate timescale. (Events which occurred more than a few days ago may be forgotten, or seem to have occurred much longer ago than they actually did.)
    This type of adrenaline surge can sometimes fool even the most experienced M.E. patients. Having hope of improvement replaced with the realities of a severe relapse can be very disheartening, to say the least.
  • When a patient regularly pays a big price for doing small tasks but then suddenly pays only a small price for a big task, suspect an adrenaline surge. There is just no such thing as a free lunch with M.E., unfortunately. (No expected relapse indicates use of the ‘credit card’ or that the patient’s body is ‘writing cheques it can’t cash!’)
  • Often a considerable rest period is needed before and after a task, which may be hours, days, weeks or months long. For example, someone may need 2 weeks rest before an outing, for example, and may then spend 3 weeks extremely ill afterwards recovering from it. The need for a long rest period before a task is a sign that this task is not within usual limits and will probably require an adrenaline surge to be completed and so be detrimental to the patient’s long-term health.
    Ideally, a patient will only complete tasks which can be done daily or every second or third day without causing relapse. The goal is to do only 80% of the activity that can be done sustainably each day.
  • Thanks to adrenaline surges, a patient may spend several hours one day a week studying or working and then 6 days extremely ill and disabled, or be able to struggle through study or work part-time and spend the other half of their week as well as all their weeks off and end of year holiday time extremely ill and disabled. This type of schedule can only be kept up for a few years at best, as the patient becomes sicker and sicker and less able to bounce back from relapses.
  • Some patients will manage their limits very carefully but still exhibit signs that they are running on a low level of adrenaline most or all of the time. This is likely an indication that more rest is needed and that more challenging tasks should, if possible, be scaled back or discontinued.
  • When the adrenaline surge starts to wane, the patient will often feel very irritable. Part of this is due to problems with blood sugar and so eating a substantial meal can help the patient feel better both physically and emotionally. Cravings for sugar and carbohydrate-rich foods are common at this time, but a meal containing some protein, fat and some low GI and GL carbohydrate foods is a better choice. Part of this is also an emotional response, as coming down form an adrenaline high is very difficult emotionally. A patient has just had a reminder of how it might be if they were not as ill and disabled, and also has a significant worsening of their symptoms and disability level.
    The patient may also feel very cold and shaky and even more sensitive than usual to light and noise as an adrenaline surge starts to wane.
  • When a person with M.E. starts to rest after an adrenaline surge, it takes a little while for the adrenaline to wear off. So the patient will start resting and slowly start to feel more and more unwell. Unfortunately the patient will have to go through a period of feeling much worse, in order to feel better. Starting to feel worse shows that the adrenaline is wearing off and that the patient is resting properly. The period of feeling very ill may last for hours, days or weeks or longer, depending on how ill the patient is and how severely they overexerted.
    In contrast, when a M.E. patient who has not overexerted rests they will feel better right away and this improvement may continue to build over time. Thus feeling much more ill after a period of resting is another sign that the patient has been running on adrenaline and overexerting.

 

What can you do to help?

  • When you notice fast talking, and other signs of an adrenaline burst or surge, encourage the patient to slow down. Perhaps remind them that the sooner they rest, the better off they will be.
  • When a patient is talking very fast and very loudly, subtle reminders to speak more quietly may be helpful. (Remember that slow slurred talking may in fact be a very good sign of health and of living within limits!)
  • When you notice a patient sitting or standing up when they do not need to, or for longer than they can usually cope with, a reminder to lie down may be helpful as the patient may not realise that they are standing up for too long.
  • When the patient has completed a big task that was far beyond their limits out of necessity, be aware from the outset that this will cause a surge of adrenaline to be released. This surge will affect the patient during the event but probably also for some days or weeks or months afterwards. The patient may feel somewhat less ill and be able to do some tasks which they haven’t managed for some time. But tasks done using adrenaline surges come at a very high cost long-term and so must be strongly discouraged and absolutely never encouraged.
    Making sure that the patient is aware of this characteristic of M.E. before a big task is completed and before they tragically misinterpret these signs of serious overexertion and illness as a desperately wanted improvement in their condition can only be helpful.
  • When a big adrenaline surge has occurred, the only way to stop it is to make sure that the body is no longer placed in physiological difficulty. For the severe M.E. patient, this will mean at least 3 days of complete rest. (The time period of rest needed will vary with how severe and prolonged the surge is and how ill the patient is.) Adrenaline will stop being released when the body is at rest and time has passed allowing the adrenaline in the system to wear off.
    Severely affected patients will need almost complete rest constantly, to avoid adrenaline surges and relapses in symptoms.
  • Do not instigate conversations with a patient when they are trying hard to come down off an adrenaline surge. You may ruin hours of solid resting by asking a question that forces the patient’s body to have to rely on adrenaline again in order to reply. If possible, write down any questions you have so that the patient can answer them in their own time and in the way easiest for them. When patients are severely affected and can’t speak often, you may want to devise a system whereby they can reply to yes and no questions or questions with 2 options using hand signals or printed cards.
  • If possible, if you are a carer who visits the patient’s home for a few hours a day, make a set time to talk to the patient so that they do not have to be in ‘on’ and ready to talk the whole time you are there. Staying ‘on’ may require an adrenaline burst and leave the patient very ill afterwards even of you only spoke to them very briefly. Having to be ‘on’ in case of interaction is almost as taxing as actually talking, for many patients.
  • When you speak to a M.E. patient who is very ill or relapsing, speak slowly, calmly and somewhat softly. Do not speak loudly or shout. Do not ask stressful or difficult questions when the patient is at their most ill or if it is not their ‘best’ time of day.
  • Don’t repeat things unless you are asked or indicated to do so. M.E. patients often have a significant time delay in understanding spoken words, and they may rely on a period of silence after each statement in order to understand what you have said.
  • For more information on how to appropriately treat M.E. patients and help them to avoid relapse please see the following two essential papers:Hospital or carer notes for M.E. and also Why patients with severe M.E. are housebound and bedbound.

 

How should you use this information?

This paper largely focuses on patients who are at the severe end of the moderate continuum to severely affected patients who are almost entirely bedbound. It will have to be adjusted somewhat for patients who are more moderately affected, or extremely severely affected.

How much assistance and guidance you give a M.E. patient to help them minimise relapses depends on several factors. These include how close you are to the patient, how receptive they are to input from you, how ill the patient is and how well they are managing their symptoms and relapses themselves.

M.E. patients understand their own limits very, very well almost all of the time. All they may need from you is the occasional verbal reminder to lie down or to rest.

Perhaps in most cases, just the fact that you have a desire to help and have read this paper and that you both have a solid understanding of the challenges they face and the nature of M.E. relapses will be enough. Knowledge is power.

 

Conclusion

It may seem obvious that M.E. patients would always do what is best for their long-term outcome, but this is not always the case. M.E. is a very difficult disease to manage. M.E. patients are very often sick to death of all the resting, carefulness and explaining required of them and so anything that you can do to help is very welcome.

Thank you for taking the time to read this paper.

Relevant HFME videos

More information

For more information on adrenaline surges in M.E., and the different order in which certain bodily systems may be affected by M.E. (and by overexertion), see the Dr Cheney section inThe effects of CBT and GET on patients with Myalgic Encephalomyelitis orTreating Myalgic Encephalomyelitis – Avoiding Overexertion. See also Hospital or carer notes for M.E. and Why patients with severe M.E. are housebound and bedbound.

For more information about the medical and political facts of M.E. see:What is Myalgic Encephalomyelitis? Extra extended version and Who benefits from ‘CFS’ and ‘ME/CFS’?

If you know someone with M.E. and want to know how to deal with it, and what you can do to help, then please read So you know someone with M.E.?

M.E. patients and those involved in determining treatment for M.E. patients may wish to look at theHealth, Healing & Hummingbirds website which discusses treatment for M.E. generally, and also treatments which may assist normal adrenal function (such as extra B complex and vitamin B5, high-dose vitamin C, vitamin A, unrefined sea salt and ashwagandha).

All M.E. patients need to have their cortisol levels checked regularly. Low cortisol levels are well documented in M.E. In some cases testing may indicate very low cortisol levels and a prescription for low dose prednisone may be required. See Testing for M.E. for more information.

To read a list of all the articles on this site suitable for different groups such as M.E. patients, carers, friends and family, the ‘CFS’ misdiagnosed, doctors or severe M.E. patients and so on, see theInformation Guides page.

Assisting the M.E. patient in managing relapses and adrenaline surges – Summary

It is very important that M.E. patients stay within their limits in order to prevent relapse and disease progression and so that chances for significant recovery are not destroyed. This paper explains how carers and loved ones of M.E. patients can help patients to avoid overexertion and so have their best possible long-term health outcome.

 

People with M.E. can sometimes operate significantly above their actual illness level for certain periods of time thanks to surges of adrenaline released when the body is put in physiological difficulty – albeit at the cost of severe and prolonged worsening of the illness afterward. These adrenaline surges are a bit like credit cards. They allow patients to do things that they could never otherwise do, or ‘afford.’ But the interest rate is extortionate.

 

Signs that a M.E. patient is overexerting or running on adrenaline, may include the following:

  • Very fast, loud and continuous talking is a sure sign of an adrenaline burst. The patient may also sit up or stand for longer than usual (without realising they are doing so) or get ‘hyper’ and fired up to undertake tasks that they would usually be too ill to do. Sleeping and resting is very difficult as the patient feels ‘wired’ and very ‘unfatigued.’
  • A lack of facial expression and ‘slack’ facial muscles and/or extreme facial pallor.
  • A burning sensation in the eyes and/or an inability to tolerate visual stimulus and to keep the eyes open.
  • Excessive water drinking (to try and boost blood volume) and excessive hunger and a desire for sugar- or carbohydrate –rich foods. Even after eating, the patient may still feel as if they have very low blood sugar and may need to eat far more often than usual.
  • Sweating or shortness of breath after minor exertion or a sudden loss of the ability to walk.
  • Visible shaking of the arms or legs or twitching facial muscles.
  • Paralysis and weakness in the muscles or an inability to move, speak or understand speech.
  • Very distinctly pink, purple or blue feet or legs, with white blotches, after standing or sitting for too long.
  • Patients may complain of a severe headache or feeling of pain or pressure at the base of the skull. This may also be accompanied by pain behind one or both eyes or ears, or blackouts.
  • Sudden onset ringing in the ears or loss of hearing or sore throat and painful glands in the neck.
  • During and after overexertion, a patient’s pulse will very often become much faster (150 bpm or more), their blood pressure will become lower and their temperature may rise and they may feel very hot.

 

When a patient declares that they are improving and suddenly able to do tasks again which they have not been able to do for many months or years – and this occurs right after a very big task has been completed such as a house move or a very taxing trip to the doctor, it is almost certainly an adrenaline surge and not a real improvement. Improvements just do not occur after overexertion in M.E. this way. The big task was well beyond their limits and so the body has released a surge of adrenaline just to cope. Unfortunately, this type of lower-level but prolonged adrenaline surge will often be less easily recognized for what it is by the patient.

 

Tasks done using adrenaline surges come at a very high cost long-term and so must be strongly discouraged and absolutely never encouraged. You might gently remind the patient to lie down and rest if they sit up for much longer than usual, or are talking very fast and far more than usual, and so on. Do not instigate conversations with a patient when they are trying hard to come down off an adrenaline surge as this can undo hours of resting. If possible, make a set time to talk to the patient so that they do not have to be in ‘on’ and potentially ready to talk for hours at a time as this is almost as taxing as actually talking for many patients.

 

The only way to stop an adrenaline surge is to make sure that the body is no longer placed in physiological difficulty. This often means 3 days or more of absolute rest. While some of the effects of overexertion are immediate there are also secondary relapses that are delayed by 24 – 72 hours. Ideally, a patient will live long-term only completing tasks which can be done daily or every second or third day without causing relapse.

 

In most cases, just the fact that you have a solid understanding of the challenges patients face, understand the nature of M.E. relapses, and know how to help to not make things harder, will be helpful enough. Thank you for taking the time to read this paper. Please see the full-length version for more information.

References

The foundations of the pathology and symptomatology described in this text are well documented. For referenced information on the importance of avoiding overexertion in M.E., cardiac insufficiency in M.E., deaths in M.E. patients caused by overexertion, circulating blood volume being reduced to 50% or less and very low blood pressure readings in M.E., severely reduced cortisol levels in M.E. and the delayed effects of overexertion in M.E. etc. please see: What is M.E.? Extra extended version,Testing for M.E. andThe effects of CBT and GET on patients with M.E.

What is not as well documented, however, is the exact nature of the relapses and adrenaline surges in M.E. The details on adrenaline surges included in this paper have been taken largely from hundreds of patient accounts shared with me both privately and in various online groups over the last 10 years or so, as well as my own experiences as a long-term M.E. patient. The feedback I have had so far from M.E. patients that have read this paper has been overwhelming and very positive. It has probably gotten the most positive feedback of almost any paper I have written, and the most responses as well. Further comments and suggestions from knowledgeable patients or doctors are always welcome.

Reference list:

  • Bassett, Jodi 2011, The Ultra-Comprehensive Myalgic Encephalomyelitis Symptom List [Online], Available: http://www.hfme.org/themesymptomlist.htm
  • Bastien, Sheila PhD. 1992, Patterns of Neuropsychological Abnormalities and Cognitive Impairment in Adults and Children in Hyde, Byron M.D. (ed) 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis, Nightingale Research Foundation, Ottawa
  • Cheney, Paul M.D. 2006, The Heart of the Matter , Available:http://www.hfme.org/wcheney.htm
  • Dowsett E. & Ramsay, A.M. n.d., ‘ Myalgic Encephalomyelitis: Then and Now’ The Clinical and Scientific Basis of Myalgic Encephalomyelitis, B. Hyde (ed.), The Nightingale Foundation, Ottawa, pp. 81-84.
  • Dowsett E., Ramsay A.M., McCartney A.R., & Bell E.J. 1990, ‘ Myalgic Encephalomyelitis: A persistent Enteroviral Infection?’ in The Clinical and Scientific Basis of Myalgic Encephalomyelitis,B. Hyde (ed.), The Nightingale Foundation, Ottawa, pp. 285-291.
  • Dowsett, Elizabeth MBChB. 1998, Can Hysteria be diagnosed with confidence ? – Conflicts in British Research, [Online], Available: http://www.hfme.org/wdowsett.htm
  • Dowsett, Elizabeth MBChB. 1999a, Redefinitions of ME [Online], Available:http://www.hfme.org/wdowsett.htm
  • Dowsett, Elizabeth MBChB. 1999b, Research into ME 1988 – 1998 Too much PHILOSOPHY and too little BASIC CIENCE!, [Online], Available: http://www.hfme.org/wdowsett.htm
  • Dowsett, Elizabeth MBChB. 2000, Mobility problems in ME [Online], Available:http://www.hfme.org/wdowsett.htm
  • Dowsett, Elizabeth MBChB. 2001a, THE LATE EFFECTS OF ME Can they be distinguished from the Post-polio syndrome? [Online], Available: http://www.hfme.org/wdowsett.htm
  • Dowsett, Elizabeth MBChB. 2001b, A rose by any other name [Online], Available:http://www.hfme.org/wdowsett.htm
  • Dowsett, Elizabeth MBChB. 2002a, The impact of persistent enteroviral infection, [Online], Available: http://www.hfme.org/wdowsett.htm
  • Dowsett, Elizabeth MBChB. 2002b, MEDICAL RESEARCH COUNCIL DRAFT DOCUMENT FOR PUBLIC CONSULTATION, [Online], Available: http://www.hfme.org/wdowsett.htm
  • Dowsett, Elizabeth MBChB. in: Colby, Jane 1996, ME: The New Plague, Ipswitch Book Company, Ipswitch.
  • Dowsett, Elizabeth MBChB. n.d. a, Differences between ME and CFS, [Online], Available:http://www.hfme.org/wdowsett.htm
  • Dowsett, Elizabeth MBChB. n.d. b, Time to put the exercise cure to rest, [Online], Available:http://www.hfme.org/wdowsett.htm
  • Dowsett, Elizabeth MBChB. n.d. c, Is Stress more than a modern buzz word?, [Online], Available:http://www.hfme.org/wdowsett.htm
  • Dowsett, Elizabeth MBChB. n.d. d, Brain problems in ME – is there a simple explanation? , [Online], Available: http://www.hfme.org/wdowsett.htm
  • Hooper, M. 2003a, The MENTAL HEALTH MOVEMENT: PERSECUTION OF PATIENTS? A CONSIDERATION OF THE ROLE OF PROFESSOR SIMON WESSELY AND OTHER MEMBERS OF THE “WESSELY SCHOOL” IN THE PERCEPTION OF MYALGIC ENCEPHALOMYELITIS (ME) IN THE UK [Online], Available: http://www.hfme.org/whooper.htm
  • Hyde, Byron M.D. & Anil Jain M.D. 1992,Clinical Observations of Central Nervous System Dysfunction in Post Infectious, Acute Onset M.E. in Hyde, Byron M.D. (ed) 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis, Nightingale Research Foundation, Ottawa, pp. 38-65.
  • Hyde, Byron M.D. & Anil Jain M.D. 1992a, Cardiac and Cardiovascular aspects of M.E.: A Reviewin Hyde, Byron M.D. (ed) 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis, Nightingale Research Foundation, Ottawa, pp. 375-383.
  • Hyde, Byron M.D. 1992, Preface in Hyde, Byron M.D. (ed) 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis, Nightingale Research Foundation, Ottawa.
  • Hyde, Byron M.D. 1998, Are Myalgic Encephalomyelitis and CFS Synonymous Terms? [Online], Available: http://www.hfme.org/whydesynonymousterms.htm
  • Hyde, Byron M.D. 2003, The Complexities of Diagnosis in (ed) Jason, Leonard at et al. 2003Handbook of Chronic Fatigue Syndrome by Ross Wiley and Sons, USA. Available:http://www.hfme.org/whydepapers.htm#390405053
  • Hyde, Byron M.D. 2006, A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome [Online], Available:http://www.hfme.org/whydepapers.htm#390405053
  • Hyde, Byron M.D. 2007, The Nightingale Definition of Myalgic Encephalomyelitis [Online], Available: http://www.hfme.org/whydepapers.htm#390403648
  • Hyde, Byron M.D., Bastien S Ph.D. & Anil Jain M.D. 1992, General Information, Post Infectious, Acute Onset M.E. in Hyde, Byron M.D. (ed) 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis, Nightingale Research Foundation, Ottawa, pp. 25-37.
  • Ramsay, A. 1988, Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free Disease, Gower Medical Publishing, London.
  • Ramsay, Melvin A. 1986, MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath. [Online], Available: http://www.hfme.org/wramsay.htm
  • Ramsay, Melvin A. 1989, ME Association Newsletter, Winter 1989: pp. 20-21.
  • Ramsay, Melvin A. n.d., The Myalgic Encephalomyelitis syndrome [Online], Available:http://www.hfme.org/wramsay.htm
  • The 25% M.E. Group. 2004, SEVERELY AFFECTED ME (MYALGIC ENCEPHALOMYELITIS) ANALYSIS REPORT ON QUESTIONNAIRE [Online]. Available: (link in title)

Before reading any of the above links to research/advocacy information, please be aware of the following facts: 
1. Myalgic Encephalomyelitis (M.E.) and ‘Chronic Fatigue Syndrome'(CFS) are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community was to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies/articles and books refer in part to people with M.E., but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacypaper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies (etc.) to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology;. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained inA warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting Research and Articles on M.E. into Context.

 

Acknowledgments

Thank you to Caroline G. for editing this paper. Thank you to Victoria for suggesting the topic of this paper. Thank you to Victoria, Frir, Clytie and everyone else who contributed to this paper.

 

Quotes

i feel sick,foggy, achy, weak, dizzy, jangly but not yummy old fatigue: like you get when you have walked to the beach, or dug a garden bed, or shopped til you dropped.

Barbara LR. M.E. sufferer

M.E. appears to be in this same family of diseases as paralytic polio and MS. M.E. is definitely less fulminant than MS but more generalized. M.E. is less fulminant but more generalized than poliomyelitis. This relationship of M.E.-like illness to poliomyelitis is not new and is of course the reason that Alexander Gilliam, in his analysis of the Los Angeles County General Hospital M.E. epidemic in 1934, called M.E. atypical poliomyelitis.

The Nightingale Definition of Myalgic Encephalomyelitis (M.E.) by Dr Byron Hyde 2006

M.E. is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis (The brain can no longer receive, store or act upon information which enables it to control vital body functions, cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance, appreciation of space, shape etc). It has an UNIQUE Neuro-hormonal profile.

Dr Elizabeth Dowsett

There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over exertion.

Dr Elizabeth Dowsett

In all M.E. epidemic or endemic patients the patients represent acute onset illnesses. The fatigue criteria listed here can be found in hundreds of chronic illnesses and clearly defines nothing.

A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome by Dr Byron Hyde 2006

This illness is distinguished from a variety of other post-viral states by a unique clinical and epidemiological pattern characteristic of enteroviral infection. Prompt recognition and advice to avoid over-exertion is mandatory.

Dr Melvin Ramsay & Dr Elizabeth Dowsett

[Legitimate descriptions of the illness are] a far cry from the hopelessly inadequate description of M.E. as ‘chronic fatigue.’ The distinction between fatigue and M.E. needs emphasising. If you are tired all the time, you do not have M.E. If you are feeling drained following a viral illness but are recovering over weeks or months, you do not have M.E. A central problem is the word ‘fatigue’ which doesn’t come close to describing how sufferers can feel – comatose might be better. Like most people with M.E. I have acquaintances who say, ‘Oh I feel tired at 4pm too, and would love a snooze.’ But that’s not it. Minds and bodies do not function. This is nothing like fatigue. 
Lynn Michell in ‘Shattered: Life with M.E.’ p 6

If patients draw down their lifestyle to live within the means of the reduced cardiac output, then progression into congestive cardiac failure (CCF) is slowed down, but if things continue to progress, a point will be reached where there is no adequate cardiac output, and dyspnoea will develop, with ankle oedema and other signs of congestive cardiac failure. In order to stay relatively stable, it is essential for the patient not to create metabolic demand that the low cardiac output cannot match.
Dr Paul Cheney

Dr. Paul Cheney explained how the bodies of patients are choosing between lower energy and life, or higher energy and death. On a physiological level, patients live in a near-death suspension, making patients feel much like they are dying, not tired.

Peggy Munson 2003

There is a difference between diastolic dysfunction and diastolic failure: in diastolic dysfunction there is a filling problem but the body is compensating for it and achieving enough cardiac output to match metabolic demand. Diastolic failure begins when the body can no longer compensate and there is a reduction in cardiac output. This is seen in 80% of patients. In order to stay relatively stable and avoid heart failure, it is essential for the patient not to create metabolic demand that the low cardiac output cannot match.

Dr Paul Cheney

Patients have a high heart rate but a low cardiac output. There is a cardiac dimension that is independent of (but not excluding) autonomic function or blood volume. It’s hard to talk about a low cardiac output without talking about the involvement of the brain and the adrenal glands. A mismatch between metabolic demand and cardiac output, even very briefly, will kill. If the cardiac output goes down, in order not to die, there is a rise in noradrenergic tone (also involving the adrenal glands) to bring the output back up. This is a serious problem, because when the adrenals are exhausted, there will be low cardiac output. There is no such thing as an [M.E.] patient who is NOT hypothyroid: this has nothing to do with thyroid failure, but everything to do with matching metabolic demand and cardiac output. 
Dr Paul Cheney

Order of sacrifice in cases of declining microcirculation; First is the skin; second is the muscles and joints; third is the liver and gut (patients can usually only tolerate a few foods); fourth is the brain; fifth is the heart; sixth is the lung and lastly is the kidney.

Dr Paul Cheney

Among the major causes of death in [M.E.] is heart failure: 20% die of heart failure. There are two types of heart failure: systolic (which is a failure to eject) and diastolic (which is not a failure to eject, but a failure to fill properly). There are two types of diastolic heart failure: primary relaxation deficit giving rise to decreased cellular energy as seen in [M.E.] and secondary relaxation deficit as seen in hypertension, diabetes and the elderly over age 75. Primary relaxation deficit is a disorder that seems to have gone right under the radar of most cardiologists (who focus on the secondary relaxation deficit). Diastolic heart failure was first described in the 1980s but there was no significant literature until the 1990s, and no significant way to measure it until 2001. One is just as likely to die of diastolic heart failure as from systolic heart failure.

Dr Paul Cheney

If your illness is ME, the main thing you can do to help yourself is not push beyond your limits. I seriously damaged my health by pushing myself to continue at work after I became ill. I bitterly regret that now. I wish I had had access to Jodi’s Hummingbird website at that time, which gives the all-important message that we must not push beyond our limits. Lesley, M.E. patient taken from Group comments on the importance of avoiding overexertion in M.E.

ME “old-timers” all say the same thing. Please take really good care of yourself, and don’t get into the mindset of “needing” to push yourself because of things you want to do in the future. When you have ME, it’s important to NOT push yourself, so you’ll still be able to do those things in the future! You deserve to take really, really good care of yourself, especially right now, in the beginning.
I did the same thing too (pushing through, and over-exerting), and I regret every moment of it. If you are still within the first few years, and it IS really ME, please slow down the pace of your life – you still have a chance of a meaningful recovery if you’re very careful. I wish I could go back and do it all over, but since I can’t, I wanted to tell you that you can avoid the mistake we’ve made. I am now totally disabled, and during my “healthy times”, I am doing good to leave the house for a couple hours 2 times a week (and there are a LOT of ME patients much worse off than me!). I also go through periods when I deal with a worsening of my symptoms (like now) and these periods are especially difficult to deal with (bed bound, house bound, etc for extended periods). Sarah, M.E. patient taken from Group comments on the importance of avoiding overexertion in M.E.

My worst acceleration in symptoms was when I was trying to work and go to university at the same time. I really wish I had listened to my body and stopped earlier (although I know this is really hard to do). I might have been able to go back and work part-time or something. As it is, I’m pretty sure the damage is permanent now. I don’t think I will ever be able to work again. On the other hand I am so glad that I did not keep going. I’m sure that I would be a lot worse (scary thought!) if I had. N, M.E. patient taken fromGroup comments on the importance of avoiding overexertion in M.E.

‘Adrenaline surges are one of the best and worst things about M.E. They provide a way for our bodies to cope with overexertion in the short term and they can allow us to attend events that are very important to us (such as funerals, weddings and medical appointments) which we would normally be too ill for. Unfortunately, they also let our bodies ‘write cheques they can’t cash’ and are the reason why so many of us are severely affected. The payback for each adrenaline surge is just so enormous and so prolonged. It can be tempting to rely on them for a while especially when you are first ill, until the whole house of cards inevitably falls down and you are far more ill than when you started, possibly for months or years afterward. Adrenaline surges are also so often misunderstood by others. For example, when I warn a friend that I am having a bad day and may not be up to much while we have our visit, the adrenaline surge phenomena of M.E. sometimes creates an illusion of good health. I get more and more ill as the evening wears on, and when it gets bad enough that my body is in real physiological difficulty, my body floods with adrenaline and I appear to suddenly become quite well. I talk a lot and very quickly. It is frustrating but of course quite understandable that so few people can see the difference between genuine health and vitality, and an adrenaline surge brought on by a health crisis, the latter of which is anything but a sign of good health in the M.E. patient. I don’t expect others to always recognise this sign of a pending relapse, but to have it misinterpreted as a sign of improvement can be hard to take!’  JODI, M.E. PATIENT

If it is ME & you continue to overdo, you may well end up sooooooo much worse than you are now. It happened to Jodi, it happened to me, this determination that we are suffused with in our culture of soldiering through & mind over matter & good people get well…& then we do “fight the good fight”…& with this desease the price is very, very high & can be permanent. Hate to be a harbinger of doom, I know it is hard to imagine being more ill, but you do have an opportunity here to avoid our fate. Hard choices I know. Aylwin, M.E. patient taken from Group comments on the importance of avoiding overexertion in M.E.

Dedication

This paper is dedicated to my dear friend Aylwin Catchpole. Aylwin was the first fellow M.E. patient I met that really understood that the ‘adrenaline surge’ was a part of M.E. and was suffering with it all as much as I was. Over many emailed conversations she helped me understand this phenomenon, and so was very much a contributor to this paper. Aylwin died in 2010 (before this paper was written) and is much missed, but I am sure she would be happy to know that this paper had been written and that hopefully many M.E. patients will get this information at the start of their disease, rather than many years or decades in – like we both did.

For more information on Aylwin see: A memorial page and a memorial fund for Aylwin Catchpole

A one-page summary of the facts of M.E.

Copyright © by Jodi Bassett January 2009 on http://www.hfme.org This version updated August 2009

  • Myalgic Encephalomyelitis is a disabling neurological disease that is very similar to multiple sclerosis (M.S.) and poliomyelitis (polio). Earlier names for M.E. were ‘atypical multiple sclerosis’ and ‘atypical polio.’
  • Myalgic Encephalomyelitis is a neurological disease characterised by scientifically measurable post-encephalitic damage to the brain stem. This damage is an essential part of M.E., hence the name M.E. The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation. This neurological damage has been confirmed in autopsies of M.E. patients.
  • Myalgic Encephalomyelitis has been recognised by the World Health Organization’s International Classification of Diseases since 1969 as a distinct organic neurological disease. M.E. is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.
  • Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis. More than 64 individual symptoms of M.E. have been scientifically documented.
  • Myalgic Encephalomyelitis is an acute (sudden) onset, infectious neurological disease caused by a virus (a virus with a 4-7 day incubation period). M.E. occurs in epidemics as well as sporadically and over 60 M.E. outbreaks have been recorded worldwide since 1934. There is ample evidence that M.E. is caused by the same type of virus that causes polio; an enterovirus.
  • Myalgic Encephalomyelitis can be more disabling than MS or polio, and many other serious diseases. M.E. is one of the most disabling diseases that exists. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic movement and communication.
  • Why are Myalgic Encephalomyelitis patients so severely and uniquely disabled? For a person to stay alive, the heart must pump a certain base-level amount of blood. Every time a person is active, this increases the amount of blood the heart needs to pump. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart.

    However, the hearts of M.E. patients barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input.
    This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor ‘activities’ can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (eg. heart damage or organ failure), disease progression or death.

    If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive.

    M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.

  • Myalgic Encephalomyelitis is a testable and scientifically measurable disease with several unique features that is not difficult to diagnose (within just a few weeks of onset) using a series of objective tests (eg. MRI and SPECT brain scans). Abnormalities are also visible on physical exam in M.E.
  • Myalgic Encephalomyelitis is a long-term/lifelong neurological disease that affects more than one million adults and children worldwide. In some cases M.E. is fatal. (Causes of death in M.E. include heart failure.)

For more information, and to read a fully-referenced version of this text, compiled using information from the world’s leading M.E. experts, please see: What is M.E.? Extra extended version. Permission is given for this unedited document to be freely redistributed. Please redistribute this text widely.

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Male and female power, and ‘structural analysis’ – avoiding the MRA contagion

There’s an MRA-style position too beloved of economistic socialists — it would be wrong to call them marxists — which treats women’s unsympathetic wordstowards males as being on a par with male-pattern control over women and children, and all the violence and abuse which that entails.

This economism acts as though a sufficient anti-capitalist critique can be accomplished by ignoring capital’s support for male power over women and children, and by blaming DV and rape mainly on ‘poverty and cutbacks’. By avoiding any mention of gendered socialisation and how it is actively enforced, especially via society’s main institutions, from birth.

Real marxists reject the claim that this is any kind of competent ‘structural analysis’.

The failure to get this right makes it impossible to ‘structurally critique’, or understand the inherently oppressive nature of, a key institution of capitalism — the capitalist (male-led) family unit:

+ We can end up endorsing capitalism’s conflation of female self-defence with male attacks on us. And its state institutions’ increased recording and punishment of ‘female violence’ instead of taking action against the male perpetrators (mostly partners or family members) who the women and girls were struggling against.

+ We can end up thinking that male children are as endangered by male-averse women muttering about them as they are by their family. (Statistically, the former are nearly no threat, whereas family and older acquaintances — especially older males — are a large threat.)

+ We can fail to understand the MRA-style psychology of the brocialists who portray as dangerous the women who joke about lopping off penises. Or the psychology of brocialists who joke about women who really do this. In fact, women who joke about doing it are a threat to nearly no man, whereas women abused by men might, very occasionally, do it. Socialists who joke about women experiencing such long-term abuse are no healthy or revolution-promoting force.

Part of male supremacy’s constant policing of women, to keep us too intimidated to oppose it much, is its practice of making us feel like the aggressors no matter what. (Sometimes women are manipulated into enacting this policing on its behalf, ‘jumping down our throats’ at what are merely factual comments about patterns of abuse from men.)

Poststructuralist politics, which have invaded anti-capitalist ideas more than we realise, exacerbate all this by holding that criticism or ‘discourse’ are what oppress us, and by ignoring real, class-based dynamics. Such as capitalism’s institutional enforcement of male power over females — for instance, by ensuring that women and girls who kill men to escape longterm abuse can receive far heftier prison sentences than many murderers do, whereas men who kill their female partners are typically treated more leniently than other murderers.

These postmodernist (‘pomo’) politics have transformed the previously more materialist and structural takes on socialisation. Gendered socialisation is no longer considered an outcome of the sex hierarchy as it is moulded into and reinforced by all major social institutions. Rather, it is considered something more like ‘free-floating ideology’, which individuals can readily recognise and even opt out of. (Even, to listen to some trans activists, something which one can opt into, as if by tuning into the feminine radio station of one’s choice, and tuning out of the masculine one.) Or perhaps something which parents teach their children — or don’t, if they are “gender free”.

While these elements of conscious identification with the dominating or subordinate sexes have some reality (and we do need to keep trying to disengage from male supremacist ideology and practices), these liberal understandings of socialisation:

  • overemphasise the degree to which people are both willing and capable to recognise and challenge their own socialisation. People detrimentally affected by their sex’s socially enforced role have significantly more stake in challenging their socialisation to submit than do those whose socialisation to dominate, and take advantage of, already has society’s backing. Trans women may like thinking of themselves as female, but they tend towards male patterns of criminality, especially in regards to violent crimes.
  • overemphasise how much both the adults in the family unit and the capitalist education system recognise what they are teaching children. Studies have repeatedly emphasised that adults believe they are giving boys and girls equivalent time and attention, when most of it has been spent on the boys.
  • underemphasise the extent to which children learn from all their interactions with the world, and not just from what they are consciously told. Consciousness is not formed narrowly from what we hear, read or see, but also from the responses we get when we interact with the world. However much boys are allowed to like pink, they are still allowed to speak longer before being shushed or ignored, and still allowed to be more adventurous. However sporting girls are, they still learn at some stage that their bodies are considered legitimate sexual harassment targets by males — in school, on the street or socially — and that adults around them, whether family member or teacher, often will not treat all of this as a serious offence. Young men learn that they can walk or jog along the street and attract little inappropriate familiarity, and usually have no idea of the impact on young women of being refused this right.

    Consciousness is very much formed by what we are and are not allowed to get away with.

  • underemphasise already-existing knowledge on how fundamental social change occurs. It does not happen via individual family units deciding in isolation to rear their children gender-free. It occurs via overthrowing capitalist relations of production and misogynist state institutions which reinforce male supremacy, for instance courts which grant abusers access to children under the fathers’ rights belief that “all children deserve a father” (read: “all fathers deserve their children”). Social change occurs via eradicating industries which profit from the objectification and commodification of women’s bodies, and establishing a truly participatory democracy. Via a mass feminist movement of women which continues to transform society even after the overthrow of capitalist social relations, being afraid to declare that female boundaries and autonomy are nothing but healthy.

Any assertions that “I, however, was not socialised into gender”, or that “I teach my boy not to dominate or be sexist” are idealist illusions which deny the role of all social institutions, and our exchanges with all the world, in forming consciousness. Heck, they deny the role of the relations of production in forming consciousness. Upending Marx and Engels, they declare that perhaps capitalism itself cannot be nice, but we can all still act nicely and bigotry-free.

They also make us too prone to blame children’s primary care-provider, who is usually their mother, for not having ‘socialised’ the child correctly. As one commenter in a recent Facebook discussion on this pointed out, capitalist impositions on most women make this very difficult:

Poststructuralism makes us too inclined to believe that the point of undertaking a ‘structural analysis’ is less to overthrow oppressive social systems, and more to simply teach children that they are wrong, apparently thus removing the problem of socialisation. Because what kid could retain any degree of conservative psychology after this?

Similarly, we see postmodernism’s socialisation-denying consequences in the outraged declarations by the male-born that they must not be denied entry to spaces where females shower or sleep or socialise, because their agendered or even feminine nature — since by this logic, why should they not be the ones to designate it— makes them no threat. And because gendered socialisation is backed by the endemic, structural and ideological male supremacy of capitalism, we listen to and cater to this outrage — regardless of how the male persons identify.

When males are ‘‘offended’’ by slogans on feminists’ placards like “lesbians exist” and “porn hurts women”, the intentional intimidation that then follows these women relates not just to the words in question (mild and incontrovertible as they seem to be), but to how society is structured around silencing women and catering to male feelings. To understate the issue, society is not built around putting women’s wishes and words into action.

Women can be wrong, and at times our words can lend endorsement to oppression. We should also avoid using terms which objectively satisfy hate-speech criteria. Our words may be validly criticised on the basis of the politics which they support. (And frankly, I don’t joke about penis-lopping since it focusses our attention on venting rather than organising against male power. And will be taken by some male whiners as an opportunity to respond with far more harmful misogyny.)

But when the merely unsympathetic words of the ‘care-provision’ class are regarded as morally and effectively on a par with those whose abuse of females is actively enabled by capitalism’s social structures, we must recognise this as harassment designed to corral us back into our prescribed service role.

Female socialisation to ‘care’, and the political impacts on proletarian feminism

Because of our socialised belief that it is women’s responsibility to put our own needs behind those of others, women in the feminist movement also often expect its other members to deprioritise the cause and their own needs, in order to provide for theirs.

This common expectation on the part of feminist women that we should be ‘agreeable’ and ‘caring’ (at least in a performative sense, by ensuring that those around us perceive us as such) has wide-ranging ramifications, such as women desiring the cessation of both political debate and even criticism of individuals, because such criticism interferes with one’s personal and social comfort levels.

These expectations tend to work ‘down’ social hierarchies, in that more bourgeois ‘feminists’ are less accustomed to prioritising others and less accustomed to the pressure to agree with what other women say, although they may expect more proletarianised women to agree with them.

These norms are self-reinforcing, since the less we experience disagreement, the harsher it appears when it comes.

Since capitalist education and other teaching are hierarchical, we are also prone to conflating analysis with power-over-us, and to assume that a woman disagreeing with us is ‘telling us what to do’ or ‘making us discard our opinion’. We may respond by accusing her of attempting to silence us, a response which is quite likely to discourage disagreement.

Given that the women who have already spoken (and must not be disagreed with) are more likely to have voiced ideas based on what bourgeois society teaches us – in that proletarian-supporting ideas are held by a minority – this entrenches bourgeois ideas within feminism.

It also means that many feminists who officially/consciously reject feminist trends such as ‘cultural feminism’ will nonetheless prioritise approaches which strongly resemble that.

[The practice of divining a woman’s politics by how she identifies, or is identified by others, continues to have hugely limited usefulness, which is not to say it is nil.

Marxist feminists will continue to prioritise the activist efforts of women whose politics are proletarian-aligned and scientific, regardless of how they ‘identify’.]

We must be more active in recognising the pressures on women to deprioritise our own needs in favour of ‘the cause’, and reject them. Of course, capitalism also socialises us to believe we ‘need’ to focus on individual advancement only. (Which will certainly see us reaching planetary levels of increased misery so much faster.) That we ‘need’ to boost ourselves at the expense of others, and to believe we need to have our activism agreed with. This is, of course, not a real need. We are not owed agreement.

This social/emotional pressure to suppress disagreement is often boosted by a self-indulgent socialisation on the part of both men and women to believe that a woman speaking unpalatable truths is ’emotional’ or ’emotive’, and to declare her opinion or analysis a ‘rant’ without properly rebutting it. This emotional self-indulgence is enabled by an implicit understanding that the automatic attribution of illogic to women has society’s endorsement. And via the bourgeois myth that a woman with feelings cannot simultaneously manage logic. Indeed, women are so accustomed to the illogic of our social situation that we may frequently be exasperated when pointing it out.

Collectively enabling the pressure on women to agree with one another is by no means the only form which this pressure to prioritise others over one’s own needs can assume. A woman who disagrees with others with ease may also expect other women to cater to her own needs above theirs, and provide little corresponding support, via means including manipulation, abuse and taking advantage of the prevailing gendered expectations.

Let us recognise and discard these hierarchical and anti-woman responses, as much as we can. Ultimately they see us deprioritising women’s needs and engaging in very little kind of real ‘care’.

 

 

Banner image in full: socialisation not to disagree