Why are we so different?

The week before last the Centers for Disease Control -- you know, that organization that's been so efficiently using your hard earned tax dollars for ME/CFS research -- came out with a study that "confirms childhood trauma as an important risk factor of CFS."

Well, okay, ME/CFS research has long recognized that any number of stressors, be it an infection, injury, or psychological trauma, trigger ME/CFS. So why is this study all that significant unless it's to underscore that patients with CFS are a bunch of crazy people?

In addition, the study has a number of methodological problems which Pamela Weintraub lays out rather neatly using quotes from an interview with author Hillary Johnson.

Some of the Weintraub/Johnson highlights include:

• The CDC recently watered down the definition of "Chronic Fatigue Syndrome" so that people with psychiatric conditions that cause fatigue are included among those who qualify for a diagnosis of CFS. As Johnson puts it, "they have essentially medicalized ‘fatigue,' defining ‘fatigue' as a specific disease."
  

• The study fails to cite a 2001 study that found the exact opposite of what this study supports. That paper, by noted ME/CFS researcher Lenny Jason, "revealed that significantly fewer individuals with CFS reported abuse as compared with those who did not." The CDC group should have at least said what it thought the Jason et. al. group did wrong and why it discovered such a markedly different result.
  

• It was nice to see someone argue this same point I have, namely, that researchers should not be comparing CFS patients to healthy controls, but rather to MS patients or cancer patients or patients with congestive heart failure or Parkinson's disease. Are child abuse victims more likely to get other diseases such as MS or congestive heart failure? The fact that ME/CFS is singled out as connected to child abuse demonstrates a bias that believes people with CFS specifically are suffering from a form of psychopathology (or neuro-endocrine-immune-psychopathology) while those with other similar conditions are sick simply because they got the wrong genes.

• Lastly, the empirical data that the CDC used for this study were questionnaires that individuals filled out themselves and morning salivary cortisol levels. There were no tests of other known ME/CFS physical abnormalities such as low natural killer cell levels or Rnase L enzyme activation. Basically we have "fatigued" and "unwell" people who report being abused as children and have low morning cortisol levels. Big shock there!
  

Now there were patients in this study who had CFS but who did not report being abused. And apparently they did not have the low morning cortisol levels, leaving the authors to conclude that this "hypocortisolism likely reflects a marker for the risk of developing CFS rather than being a sign of the syndrome itself." So does this mean that perhaps child abuse -- which, to be sure, literally damages the brain -- exacerbates CFS or causes a whole different disease in and of itself? And if it is possible to have CFS but not have been abused as a child and therefore not have the hypocortisolism, how do they conclude that these findings "lend further support for the hypothesis that CFS represents a disorder of adaptation that is promoted by early environmental insults, leading to failure to compensate in response to challenge?" Have they shown that the non-abused CFS patients have had early environmental insults that they have failed to compensate for?

And why child abuse? Why not study childhood infection, especially as ME/CFS patients are far more likely to develop the disease following an infection? Not to belabor the point -- or maybe indeed to belabor the point -- but it does exhibit a distinct psychiatric bias here.

And, of course, the elephant in the room is always always always that the condition is defined so broadly that we don't even know if the abused CFS patients even have the same disease as the non-abused CFS patients.

I will acknowledge that I was abused as a child, and I don't doubt that has had a distinct physiological impact on me. For the longest time after leaving home I struggled with my body going into that dizzying "fight or flight" response every time I had to deal with the least bit of conflict.

After undergoing a form of therapy known as Dilectical Behavioral Therapy in which I learned various mindfulness techniques, as well as developed habits such as daily meditation, I have been able to calm that "fight or flight" response. But I remain bedridden most of the day. At best, it has helped me with pain -- of both body and soul -- as well as cope with and manage this devastating illness.

It may well be that the combination of child abuse and physical injuries and infection was just far too much for my poor body to handle. And perhaps having therapy earlier in life may have saved me from developing ME/CFS later.

(It goes without saying that um, child abuse is bad, mmkay. And does lots of bad things to a developing child, mmkay. So, you know, don't abuse your kids because they will be fucked up in ways you may not even realize, mmkay. [South Park reference for those of you not familiar with Mr Mackey and his infamous "mmkay."])

But I also know that therapy did not make me better now that I am sick. What I need the CDC to do is figure out what is happening in my body now and figure out how to to treat that now. We know that stress can cause heart disease and cancer, but we don't merely give heart disease and cancer patients a therapist. No, we treat the underlying cardiovascular and immune system pathology in addition to any underlying psychopathology. Why should it be any different in ME/CFS?

Needed sympathy

I keep telling myself to quit reading about what's going on in Gaza. I mean, I'm no longer an Israel/Palestine specialist. My days are so short from sleeping each and every day until the middle of the afternoon (or later) that I've got a backlog of email and phone calls to return, not to mention my blogging and other writing has suffered. With the power cord to my laptop broken, my online time during those precious conscious hours is even shorter while I share a cord with A. Besides, there are massacres going on all over the world such as in the Congo or Darfur, why is this one so special? And Lord knows the killing isn't going to stop based on whether or not I read about it.

I guess I just feel an obligation to make sure that as many of us are reading -- and watching and listening -- as possible to what is happening in Gaza as my country is directly involved in providing the weapons that are killing Palestinians. And while sympathy for the people in Congo or Darfur is a given (not to mention that the Congolese and Darfuris can actually flee to neighboring countries), too many people believe that it is perfectly reasonable to kill Palestinian children. I suppose in some cosmic, mystical way, I feel that my sympathy is needed.

There are, of course, plenty of people who are sympathetic to the plight of those in Gaza, including a large number of Jews. As my last post was from a Palestinian organization, I thought I would list some of the Jewish organizations and bloggers who are also appalled at what is happening to Palestinians in Gaza. Do note that this list is not even close to be exhaustive.

Ampersand (aka Barry) at Alas, A Blog posted Fathima Cader's list here. Others not mentioned in that list include:

Brit Tzedek

Jewschool

ICAHD (Israeli Committee Against Housing Demolitions)

Modern Mitzvot

Haaretz (sort of...the editors are calling for a cease fire) including columnists Gideon Levy, Amira Hass, and Akiva Eldar

JVoices

Tikkun

Tikkun Olam (Richard Silverstein)

Jews Sans Frontieres

Aron's Israel Peace blog

South Jerusalem

Residents in Sderot -- the town that's been bearing the brunt of Hamas rocket attacks.

Refuseniks -- A movement of Israeli youth who refuse to serve their required military service in the Territories. There are also links there to videos of Israelis protesting the Gaza offensive.

And some guy named Jonathan Stuart Leibowitz aka Jon Stewart.

There are plenty more and you can read them by clicking the links sections at the links listed above.

Israel has forbidden journalists from entering the Gaza Strip and bloggers inside are having a hard time detailing what's happening due to lack of electricity and mobile phone service. However there are a handful of places to read first hand what Gazans are going through.

Raising Yousef -- While Laila herself is in the US at the moment, her parents are in Gaza and she's been reporting what they are reporting to her.

Tales to Tell -- A member of the International Solidarity Movement (a good source of info itself) in Gaza who is helping where needed, particularly with the Union of Health Work Committees. Lots of ambulence rides and tales from the hospital.

In Gaza -- More hour by hour accounts.

ei -- The Electronic Intifada is a great resource of news, commentary and background information.

Please do not interpret my support for Palestinians to mean that I support Hamas. I do not support violence done by either side. And Hamas's leadership in Gaza since it took over in 2007 has been appalling and brutal.

However I do believe that Israel has an obligation to negotiate with Hamas as they are the elected leaders of the Palestinian people. If Palestinians had to negotiate with Ariel Sharon, Menachem Begin, and Itzak Shamir (though with Begin there wasn't much direct contact between Palestinians and Israelis), there's no reason why Ehud Olmert cannot sit down with Ismail Haniyeh and Khaled Meshal.

"The narrow gate of justice"

As I don't think Sabeel -- the Palestinian liberation theology center -- will mind if I post this email I got from them in regards to Gaza in its entirety, here our some thoughts on the situation between Israel and Gaza. My notes are in italics.

SABEEL'S REFLECTION ON GAZA

The Narrow Gate of Justice

"Enter through the narrow gate; for the gate is wide and the road is easy that leads to destruction, and there are many who take it. For the gate is narrow and the road is hard that leads to life, and there are few who find it." (Matthew 7:13-14)

On Saturday, December 27, 2008, as the children of Gaza were about to leave their schools to return home, the Israeli air force carried out a massive air attack against the people of Gaza. In less than 4 hours, over 150 people were killed and 200 injured - men, women, and children. By the end of the fourth day, over 390 Palestinians were killed and almost 2,000 injured. On the Israeli side, 4 were killed and no statistics are available on the number of injured.

FACTS ABOUT THE GAZA STRIP:

Population: 1.5 million. 75% of them are refugees. 45% of them are under 14 years.

Area: 360 sq km, 139 sq miles.

Population density: 4,167 people/sq mile (The highest in the world.)

80% of Gazan households live below the poverty line, subsisting on less than $3 per person a day.

80% of all Gazan families would literally starve without food aid from international agencies.

The Israeli occupation of the Gaza Strip, similar to that of the West Bank, including East Jerusalem, started with the 1967 June war. In September 2005, the Israeli army pulled out of Gaza and removed its illegal settlements. However, the illegal Israeli occupation of the Gaza Strip did not come to an end. Israel maintained its tight control over Gaza's borders (air, land, and sea). To make things even worse, Israel imposed a siege on Gaza in June 2007, thus tightening its border restrictions and causing the humanitarian conditions to deteriorate further. Under the brutal siege, every aspect of the lives of the people of Gaza was controlled. They were totally dependent on Israel for fuel, electricity, cooking gas, medical supplies, food supplies (even flour), building material, etc. Israel made sure that the Palestinians would remain alive at barely the survival and basic subsistence level (and if someone needed to leave the Gaza Strip for advanced medical treatment, he or she may or may not be able to get it).

On November 14, 2008, UN General Secretary Ban Ki Moon issued a statement that said, "The Secretary-General is concerned that food and other life saving assistance is being denied to hundreds of thousands of people, and emphasizes that measures which increase the hardship and suffering of the civilian population of the Gaza Strip as a whole are unacceptable and should cease immediately."

IMPORTANT POINTS TO REMEMBER:

FIRST: A word about tahdi'a (the period of calm or truce). It is important to note that among the terms of tahdi'a was the understanding that Israel would lift the siege of the Gaza Strip, and gradually extend the truce to the West Bank. This Israel did not do. It only partially lifted the siege and allowed a trickle of vital commodities into Gaza which kept the people at the level of mere survival. Israel's raids into the West Bank continued on a daily basis and scores of Palestinians were arrested or assassinated.

The International Herald Tribune reported on December 19, 2008 that it was Hamas' understanding that after the tahdi'a Israel would open the crossings and allow the transfer of goods that have been banned since the siege was imposed. There was never a return to the 500 - 600 truckloads of goods shipments that used to go into the Gaza Strip before the siege. "The number of trucks increased to around 90 from around 70." The facts and figures tell the real story. Sadly, however, many western leaders have shut their ears, eyes, and mouths against the cry of the oppressed. Most of the world judges Israel by what it says and not by what it does; while they close their ears to the comprehensive and workable 2002 Peace Initiative adopted by all the Arab leaders including the Palestinians. Even Hamas has agreed to a Palestinian State within the 1967 borders as expressed to President Carter on his latest visit to Syria.

SECOND: So long as Israel holds the Palestinians in general and the Gazans in particular under occupation, they (the Palestinians) have the right, according to international law, to resist the "seemingly never ending" belligerent occupation and struggle for their liberation. Israel, therefore, cannot demand from the international community sympathy and political support and from the Palestinians calm and security, while it maintains its inhuman and illegal occupation. It is only when Israel ends its occupation that it can have a legitimate right to defend its borders. Israel stands in violation of international law and is the aggressor due to its belligerent occupation.

(I would also point out that embargoes or sieges are often considered an act of war. In 1967 when Gamal abd-al Nasser closed the Straits of Tiran so that Israelis could not get goods in or out, Israel considered this an act of war and launched air strikes against Egypt, thus beginning the Six Days War. While I believe that non-violent resistence is the proper response to violence -- as does Sabeel -- Hamas technically has just as much right to use force against what it sees as an act of war. The problem, of course, is that neither Hamas nor Israel can avoid civilian casualties in the forms of warfare they have chosen and as such both are engaging in crimes against humanity. )

THIRD: The Arab leaders and governments can do more for peace (like, say, not shoot at Palestinians who were desperately trying to flee Israeli bombs). Many people accuse them of a conspiracy of silence. Most of the Arab people are ashamed of the positions of their governments because they have not used their resources collectively to end the occupation. Sabeel is not talking about the use of force although many of our Arab people do. We believe that the Arab governments could have contributed much more towards a resolution of the Palestine-Israel conflict through nonviolent means. Tragically, this did not happen.

(You may remember that Palestinians had a civil war between Hamas and Fatah that started in December 2006 and led to Hamas gaining control over Gaza leaving Fatah in control of the West Bank. Palestinian President Mahmoud Abbas, who is from Fatah, has been seeking to regain control of Gaza along with his multi-million dollar mansion located there. As Juan Cole pointed out in this article for Salon, militant groups associated with Fatah, as well as dissident Hamas groups, have been the ones lobbing most of the rockets into Sderot until Hamas announced on December 18th it would no longer keep the truce it had with Israel because Israel had not lifted the embargo and had begun violent raids in the preceeding weeks. While Israel is pounding Gaza, Abbas and Fatah are salivating at the prospect that Israel will oust Hamas, and are even quite possibly helping Israel with the current war.)

FOURTH: Although Sabeel wishes that Hamas and other Palestinian factions had chosen a nonviolent way to resist the Israeli siege, we feel that the disproportionate use of military force against the Gaza Strip and the number of casualties that it produced must be strongly condemned. It is a shame that once again many western leaders have failed to see the deeper issues that are involved. They chose to stand with the occupier rather than with the occupied, with the oppressor rather than the oppressed, and with the powerful rather than with the weak. It is important to continue the resistance against the belligerent occupation. But we call on our Palestinian people to abandon the armed struggle and to choose a more potent and effective way - the way of nonviolence. We can do it and we can win. The Palestinians are capable of setting an example for the rest of the world. This is what we must do; and this is what can restore to us our human pride and dignity.

(I would note that Israel could also be an example to the world by renouncing violence as it so frequently demands of Hamas.)

In fact, we must look to a world where wars, and weapons of violence and destruction would be banned and where oppressed nations would choose the higher moral ground and resist the evil of belligerent occupations by nonviolent means. We hope for a world where a reformed United Nations would never be held hostage by powerful nations, but would enjoy the freedom to establish justice for the oppressed of the world.

FIFTH: We believe that the real message of the Palestinians to the world is a genuine cry for freedom and liberation. The Palestinians did not initiate the violence. The prolonged illegal Israeli occupation is the real cause for the violence in our area. Israel has shut the door on justice. The only way that can guarantee a lasting resolution of the conflict is for the United States' new administration to dare and open the door of justice. We believe that it is the narrow gate of which Jesus Christ spoke. It is the gate that leads to a life of peace and security. "Enter through the narrow gate; for the gate is wide and the road is easy that leads to destruction, and there are many who take it. For the gate is narrow and the road is hard that leads to life, and there are few who find it." This is the narrow gate of justice. This is the basis of international law. The way of military domination, occupation, violence, and wars is the wide gate that leads to destruction; while the gate that seems narrow and hard is the one that leads to justice, peace and security for both sides. We have tried the wide gate and it has only brought us destruction. It is high time to try the narrow gate of justice so that we might find life.